APSFA*s Blog

2011 Giving Tree

2011-12-11T14:40:00.001-06:00

Our 6th annual Holiday Giving Tree has been planted and is ready to be decorated with your generous donations.

The APSFA Holiday Giving Tree is our largest fundraiser of the year and also wraps up the holiday giving season as well as the end of the year donations.

All you have to do is choose an ornament that corresponds with the amount you wish to donate and that ornament will then be added to our tree. By the end of the fundraiser our holiday tree is beautifully decorated with the kindness of your donations!

Click here: http://www.apsfa.org/givingtree.htm to visit our 2011 Holiday Giving Tree page.

The Fall / Winter 2011 volume of our quarterly newsletter, "Antiphospho...What??"

2011-12-02T17:58:00.000-06:00

The Fall / Winter 2011 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol23FallWin2011.pdf

The next volume will be coming out mid March 2012.

Summer / Fall 2011 volume of our quarterly newsletter, "Antiphospho...What??"

2011-09-25T21:22:00.001-05:00

The Summer / Fall 2011 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol22SumFall2011.pdf

The next volume will be coming out mid November 2011.

Please let us know if there are any topics that you'd like our Medical Advisers to cover in their articles. We try to request topics that people are emailing about or that are discussed on our the forum. So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisers.

We are still in need of patient stories (esp about Men and Teens / Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.

Please follow our current guidelines when submitting an article:
· Send your story/article to articles@apsfa.org
· Patient stories and most articles should be approx 500-750 words long and contain a title
· Articles should be written at a 5th-8th grade reading level
· Please try to include a picture when submitting a patient story
· Patient stories should read like an autobiography-generally from diagnosis to present time, but it doesn't have to

Please use previous patients stories as your guideline. They can be found here: http://www.apsfa.org/newsletters.html

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.

We could also use articles written by medical professionals or medical students on APS & APS related topics, like Lupus. Please contact us if you are interested. This is a good opportunity for you to get your name out there.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, american, association, newsletter

The Spring / Summer 2011 volume of our quarterly newsletter, "Antiphospho...What??"

2011-06-19T19:12:00.001-05:00

The Spring / Summer 2011 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol21SprSum11.pdf

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, american, association, newsletter

JUNE IS APS AWARENESS MONTH: SILENT BUT DEADLY!

2011-06-03T21:03:00.001-05:00

FOR IMMEDIATE RELEASE

Date: 05/29/2011

Contact: Christina "Tina" Pohlman

Phone: 608-782-2626

Website Address: www.apsfa.org

Email Address: apsfa@apsfa.org

JUNE IS APS AWARENESS MONTH: SILENT BUT DEADLY!

APS is an autoimmune disorder. Such illnesses occur when the body’s tissues are attacked by its own substances. In APS, the body recognizes certain components of blood or cell membranes as foreign substances and produces antibodies--a specialized protein the body uses to prevent infection--against them. It is the major cause of strokes in persons under 40 years old, blood clots (thrombosis) – which can lead to heart attack or stroke – vision disturbances and repeated, otherwise unexplainable miscarriages.

APS often is found in conjunction with lupus, another autoimmune disorder that primarily targets women.

Knowing more about APS can make all the difference. APS: Know the Symptoms of the Syndrome.

Founded in 2005, the APSFA is the leading United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization.

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626

Website Address: www.apsfa.org. Email Address: apsfa@apsfa.org

###

NOTES TO EDITORS

• The key blood tests are Anticardiolipin (aCL) antibodies (IgG, IgM, and IgA), Lupus anticoagulant (LAC) – a panel of blood clotting tests that may include the dilute Russel Viper venom time (dRVVT), lupus aPTT, mixing studies, and hex phase phospholipid test, platelet neutralization procedure and Antibodies to b2-glycoprotein I (IgG, IgM, IgA).

• The conservative estimate of people at risk from Antiphospholipid Antibody Syndrome (APS) is 1% - 5% of the population.

• In pregnancy clotting of the placenta can cause miscarriage or stillbirth. Typically, women are not tested for APS until after three consecutive miscarriages.

• The recognition and treatment of APS improves the chances of preventing miscarriage from below 20% to above 80%.

• Some cases are misdiagnosed as multiple sclerosis. Some APS patients also have Lupus.

• Founded in 2005, the APS Foundation of America, Inc. is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is http://www.apsfa.org

• All figures, unless otherwise stated, are from http://www.apsfa.org.

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, american, association, press release, 2011

Winter / Spring 2011 volume of our quarterly newsletter, "Antiphospho...What??"

2011-04-04T09:25:00.001-05:00

The Winter / Spring 2011 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol20WinSpr11.pdf

The next volume will be coming out late May 2011.

Please let us know if there are any topics that you'd like our Medical Advisers to cover in their articles. We try to request topics that people are emailing about or that are discussed on our the forum. So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisers.

We are still in need of patient stories (esp about Men and Teens / Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.

Please follow our current guidelines when submitting an article:
• Send your story/article to articles@apsfa.org
• Patient stories and most articles should be approx 500-750 words long and contain a title
• Articles should be written at a 5th-8th grade reading level
• Please try to include a picture when submitting a patient story
• Patient stories should read like an autobiography—generally from diagnosis to present time, but it doesn’t have to

Please use previous patients stories as your guideline. They can be found here: http://www.apsfa.org/newsletters.html

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.

We could also use articles written by medical professionals or medical students on APS & APS related topics, like Lupus. Please contact us if you are interested. This is a good opportunity for you to get your name out there.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, american, association, newsletter

The APSFA 2010 Holiday Giving Tree

2010-11-27T13:08:00.000-06:00

The APSFA has launched our 5th annual Holiday Giving Tree! This is our main holiday fundraiser and each one of your generous donations helps us to decorate a beautiful Christmas Tree! This tree holds a special meaning for the the APS Foundation of America, Inc. and the community it serves. Please consider the APSFA this year when making your holiday donations. All donations made towards the Giving Tree are tax deductible.

Click here to see & donate to our giving tree: http://www.apsfa.org/givingtree.htm

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, giving tree, fundraising, holiday

Fall/Winter 2010 volume of our quarterly newsletter, "Antiphospho...What??"

2010-11-21T21:51:00.001-06:00

The Fall/Winter 2010 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol19FallWin10.pdf

The next volume will be coming out mid February 2011.

Please let us know if there are any topics that you'd like our Medical Advisers to cover in their articles. We try to request topics that people are emailing about or that are discussed on our the forum. So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisers.

We are still in need of patient stories (esp about Men and Teens / Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.

Please follow our current guidelines when submitting an article:
• Send your story/article to articles@apsfa.org
• Patient stories and most articles should be approx 500-750 words long and contain a title
• Articles should be written at a 5th-8th grade reading level
• Please try to include a picture when submitting a patient story
• Patient stories should read like an autobiography—generally from diagnosis to present time, but it doesn’t have to

Please use previous patients stories as your guideline. They can be found here: http://www.apsfa.org/newsletters.html

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.

We could also use articles written by medical professionals or medical students. Please contact us if you are interested.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, american, association, newsletter

International Medical Summit Held in Miami to Stimulate Collaborative Clinical Research on Antiphospholipid Syndrome

2010-11-01T22:19:00.000-05:00

International Medical Summit Held in Miami to Stimulate Collaborative Clinical Research on Antiphospholipid Syndrome

Disease Responsible for 1 out of 3 Strokes in Young People

1 out of 4 Recurrent Miscarriages

Goal to Find a Cure and Heighten Awareness About this Devastating Disease

Miami, Nov. 1, 2010 – Antiphospholipid Syndrome (APS) is a condition that may be responsible for up to one-third of strokes in people under age 50, up to one-fifth of all cases of blood clots in large veins, and one-quarter of recurrent miscarriages. Nonetheless, relatively few randomized clinical trials have been conducted involving people with APS, and those completed have included small numbers of participants.

To stimulate an international discussion on this topic, the APS Clinical Research Task Force is hosting a summit titled, “Breaking Out of the Box,” in Miami from Nov. 2-4, 2010. The task force, co-chaired by Hospital for Special Surgery physician-scientists Doruk Erkan, M.D., and Michael D. Lockshin, M.D., was formed as a result of the 13th International Congress on Antiphospholipid Antibodies in April 2010.

The two dozen summit attendees will include experts in the field of APS research from around the world, including Australia, Brazil, Italy, the Netherlands, the United Kingdom and the United States.

“APS research has not progressed substantially over the past 25 years, after researchers developed a simple blood test to identify the antibodies,” said Dr. Lockshin, director of the Barbara Volcker Center for Women and Rheumatic Disease at Hospital for Special Surgery in New York City. “As a result, we are gathering rigorous thinkers to identify critical APS research questions and establish the process for moving forward in a coordinated, strategic international effort.”

APS involves the formation of abnormal blood clots in arteries and veins, which puts people at risk for stroke and pregnancy complications. Blood clots form because the immune system mistakenly produces antibodies against phospholipid-binding plasma proteins (aPL).

APS can be diagnosed through repeated blood testing. While no cure exists and the cause is still unclear, treatment includes long-term blood thinning to prevent clots from forming. This condition can occur in conjunction with other autoimmune diseases, such as systemic lupus erythematosus and rheumatoid arthritis.

Several major issues have slowed the progress of APS clinical research, such as the fact that there are few standardized tests to detect the antiphospholipid antibodies, study participants have a range of symptoms, the biology underlying the condition is not completely understood, and smaller efforts have not recruited enough study participants.

“There is an urgent need for a true international collaborative approach to design and conduct large-scale clinical trials involving people who have aPL,” said Dr. Erkan, clinical co-director of the Mary Kirkland Center for Lupus Care at Hospital for Special Surgery. “At this summit, we hope to stimulate dialogue about this condition and formulate a solid research question from which to generate future clinical trials that are feasible, interesting and relevant.”

The summit will include presentations about transforming and globalizing APS research, lessons learned from APS research registries, and several group brainstorming sessions for identifying, refining and finalizing research questions. Scientists will conclude by setting a timeline for critical tasks to complete in order to proceed with clinical studies.

The conclusions of the APS Clinical Research Task Force and the preliminary outcomes from the Miami summit will be presented at the upcoming American College of Rheumatology annual scientific meeting in Atlanta, in poster session A on Nov. 8 from 9 a.m.-11 a.m. as Abstract #6, Antiphospholipid Syndrome (APS) Clinical Research Task Force (CRTF) Report.

About Hospital for Special Surgery Founded in 1863, Hospital for Special Surgery (HSS) is a world leader in orthopedics, rheumatology and rehabilitation. HSS is nationally ranked No. 1 in orthopedics, No. 3 in rheumatology, and No. 16 in neurology by U.S.News & World Report (2010-11), and has received Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center, and has one of the lowest infection rates in the country. From 2007 to 2011, HSS has been a recipient of the HealthGrades Joint Replacement Excellence Award. A member of the NewYork-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College, HSS provides orthopedic and rheumatologic patient care at NewYork-Presbyterian Hospital at New York Weill Cornell Medical Center. All Hospital for Special Surgery medical staff are on the faculty of Weill Cornell Medical College. The hospital's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Hospital for Special Surgery is located in New York City and online at http://www.hss.edu/.

Phyllis Fisher
fisherp@hss.edu
212-606-1197

Tracy Hickenbottom
hickenbottomt@hss.edu
212-606-1197

###

Sent out by the APS Foundation of America, Inc

Founded in 2005, the APS Foundation of America, Inc. is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is http://www.apsfa.org/

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, american, hss, hospital for special surgery, association

The APS Foundation of America, Inc Announces World APS Day, June 9th

2010-06-09T10:55:00.002-05:00

FOR IMMEDIATE RELEASE

Date: 06/7/2010
Contact: Christina "Tina" Pohlman
Phone: 608-782-2626
Website Address: http://www.apsfa.org
Email Address: apsfa@apsfa.org

The APS Foundation of America, Inc Announces World APS Day, June 9th

The Antiphospholipid Antibody Syndrome Foundation of America, Inc. (APSFA) urges the public, as well as the medical community, to learn more about this rare disease. APS Awareness Month runs throughout June.

The APSFA is also proud to announce that June 9 is World APS Day. The APSFA would like to bring more attention & awareness to this "rare" autoimmune disease.

APS is an autoimmune disorder. Such illnesses occur when the body’s tissues are attacked by its own substances. In APS, the body recognizes certain components of blood or cell membranes as foreign substances and produces antibodies--a specialized protein the body uses to prevent infection--against them. It is the major cause of strokes in persons under 40 years old, blood clots (thrombosis) – which can lead to heart attack or stroke – vision disturbances and repeated, otherwise unexplainable miscarriages.

APS can be diagnosed with a simple blood test. It frequently is found in conjunction with lupus, another autoimmune disorder that primarily targets women.

Please join us in blogging about your experience living with Antiphospholipid Antibody Syndrome (APS) - whether you are the patient, caretaker, friend, or loved one of an APS patient. Together, we can bring awareness to this disease. We are also requesting everyone to wear burgundy on June 9th!! Please go to http://www.apsfa.org/worldapsday.htm for more information.

Knowing more about APS can make all the difference. Help us color the world burgundy on June 9th, get in the know and Get in the Flow!

Founded in 2005, the APSFA is the leading United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization.

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626 Website Address: http://www.apsfa.org. Email Address: apsfa@apsfa.org

###

NOTES TO EDITORS

• The key blood tests are Anticardiolipin (aCL) antibodies (IgG, IgM, and IgA), Lupus anticoagulant (LAC) – a panel of blood clotting tests that may include the dilute Russel Viper venom time (dRVVT), lupus aPTT, mixing studies, and hex phase phospholipid test, platelet neutralization procedure and Antibodies to b2-glycoprotein I (IgG, IgM, IgA).

• The conservative estimate of people at risk from Antiphospholipid Antibody Syndrome (APS) is 1% - 5% of the population.

• In pregnancy clotting of the placenta can cause miscarriage or stillbirth. Typically, women are not tested for APS until after three consecutive miscarriages.

• The recognition and treatment of APS improves the chances of preventing miscarriage from below 20% to above 80%.

• Some cases are misdiagnosed as multiple sclerosis. Some APS patients also have Lupus.

• Founded in 2005, the APS Foundation of America, Inc. is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is http://www.apsfa.org

• All figures, unless otherwise stated, are from http://www.apsfa.org.

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, american, association, press, release

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

2010-06-03T05:59:00.000-05:00

FOR IMMEDIATE RELEASE

Date: 06/01/2010
Contact: Christina "Tina" Pohlman
Phone: 608-782-2626
Website Address: http://www.apsfa.org
Email Address: apsfa@apsfa.org

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

The Antiphospholipid Antibody Syndrome (APS) Foundation of America, Inc. (APSFA) urges the public, as well as the medical community, to learn more about this rare disease. APS Awareness Month runs throughout June.

APS is an autoimmune disorder. Such illnesses occur when the body’s tissues are attacked by its own substances. In APS, the body recognizes certain components of blood or cell membranes as foreign substances and produces antibodies--a specialized protein the body uses to prevent infection--against them. It is the major cause of strokes in persons under 40 years old, blood clots (thrombosis) – which can lead to heart attack or stroke – vision disturbances and repeated, otherwise unexplainable miscarriages.

APS often is found in conjunction with lupus, another autoimmune disorder that primarily targets women.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

Founded in 2005, the APSFA is the leading United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization.

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626
Website Address: http://www.apsfa.org. Email Address: apsfa@apsfa.org

###

Spring/Summer 2010 volume of our quarterly newsletter, "Antiphospho...What??" is Available

2010-05-22T11:17:00.003-05:00

The Spring/Summer 2010 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link:
http://www.apsfa.org/docs/APSFAVol17SprSum2010.pdf

The next volume will be coming out mid August 2010.

Please let us know if there are any topics that you'd like our Medical Advisers to cover in their articles. We try to request topics that people are emailing about or that are discussed on our the forum. So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisers.

We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.

Please follow our current guidelines when submitting an article:
• Send your story/article to articles@apsfa.org
• Patient stories and most articles should be approx 500-750 words long and contain a title
• Articles should be written at a 5th-8th grade reading level
• Please try to include a picture when submitting a patient story
• Patient stories should read like an autobiography—generally from diagnosis to present time, but it doesn’t have to

Please use previous patients stories as your guideline. They can be found here: http://www.apsfa.org/newsletters.html

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.

We could also use articles written by medical professionals or medical students. Please contact us if you are interested.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter

Signature Tag Fundraiser

2010-05-02T11:14:00.000-05:00

Tags, or signature tags are used primarily on forums or in the signature of emails. We are offering customizable tags representing various awareness causes including and related to APS: Lupus, FVL, Thrombophilia, Hughes Syndrome, Heart Attack, Stroke, APS/Lupus, and Infant Loss.

Tags can be ordered for a $5.00 donation to the APSFA using the form below. If you would like multiple tags we are also offering 3 for a $10.00 donation. These donations are tax deductible and you will be receiving a tax receipt via email after your purchase.

Tags will be delivered via the PayPal payment email address, so if you need them sent to another email, please indicate the email address you'd like them sent to in the extra comments section when checking out. If you need a different delivery method than email, please indicate this in the comments section and we will work something out.

Only donations via PayPal will be accepted and only by using the order form below.

Please allow a 72 hour turnaround time from order to delivery.

To order click here: http://www.apsfa.org/fundraisers/tags.htm

© APS Foundation of America, Inc

To order these tags click here: http://www.apsfa.org/fundraisers/tags.htm

If you need a specific size, let us know and we'll make one for you! These are all copyright of the APSFA. DO NOT ALTER THESE GRAPHICS. For HTML codes, please contact us. APSFA ©2005 - 2010. Our copyright Notice can be located here: http://www.apsfa.org/copyright.htm

WARNING: We will enforce our copyright!

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, fundraiser, signature, tags

APS Awareness, Infant Loss Awareness Ribbon & APSFA Logo Lapel Pin Sales

2010-05-01T20:54:00.001-05:00

We have new lapel pins available! We now carry 3 different types of lapel pins: Burgundy Awareness Ribbon, APSFA Logo, and Infant Loss Awareness Ribbon. The pins are as shown above. The awareness ribbon pins measure 1 inch in size. They are die struck silver with enamel colorfill. Each pin comes with a clutch back and is individually poly bagged. The APSFA Logo pins measure 1 inch in diameter. Each pin also comes with an APS information card that measures 3 1/2 inches by 5 1/2 inches and is printed on heavy paper stock. These cards would be good to leave in a doctor's office or post on a bulletin board. A view of the card can be seen below. Awareness Ribbon Pins are $5.00 each and the APSFA Logo Lapel pins are $7.50 each.

Burgundy is also the ribbon color of the following causes: Antiphospholipid Antibody Syndrome, Brain Aneurysm, Cesarean (worn upside down), Factor V Leiden, Headaches, Hemangioma and Vascular Malformation, Hospice Care, Multiple Myeloma, Thrombophilia, William's Syndrome.

Here is a sample of the information card

Awareness Ribbon Pins are $5.00 and APSFA Lapel Pins are & $7.50 each which covers shipping, tax and a small donation to the APS Foundation of America, Inc.

If you'd like extra Information cards they are 4 for $1.00.
Payments accepted are: Paypal, Credit Cards through Paypal, Money Order, Personal Check, and Cash

To Order go to: http://www.apsfa.org/fundraiser.htm

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, fundraiser

Winter/Spring 2010 volume of our quarterly newsletter, "Antiphospho...What??" is Available

2010-03-07T18:20:00.000-06:00

The Winter/Spring 2010 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol16WinterSpring2010.pdf

The next volume will be coming out mid May, 2010.

Please let us know if there are any topics that you'd like our Medical Advisers to cover in their articles. We try to request topics that people are emailing about or that are discussed on our the forum. So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisers.

We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.

Please follow our current guidelines when submitting an article:
• Send your story/article to articles@apsfa.org
• Patient stories and most articles should be approx 500-750 words long and contain a title
• Articles should be written at a 5th-8th grade reading level
• Please try to include a picture when submitting a patient story
• Patient stories should read like an autobiography—generally from diagnosis to present time, but it doesn’t have to

Please use previous patients stories as your guideline. They can be found here: http://www.apsfa.org/newsletters.html

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.

We could also use articles written by medical professionals or medical students. Please contact us if you are interested.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter

Medical Alert Discount in Honor of DVT Awareness Month

2010-03-06T14:51:00.004-06:00

In honor of DVT Awareness Month, for the month of March MedicAlert Foundation is pleased to announce a special $10 discount for individuals diagnosed with Deep-Vein Thrombosis. (Note: offer is not strictly limited to persons with DVT.)

If an individual with a history of DVT requires emergency medical attention, emergency responders need to be made aware of current medical conditions and medications so that the individual can be rapidly transported to a proper facility for DVT or PE treatment.

MedicAlert® IDs can save lives in emergencies. We offer free engraving of your medical information i.e. taking Coumadin, Warfarin, etc. - on a genuine MedicAlert bracelet or necklace along with our 24-hour Emergency Response phone number. MedicAlert s medically trained staff is always ready to answer the call and provide your critical information to medical staff during your time of need. In addition, we also notify your family contacts if there is an emergency.

To become a MedicAlert member, call 1-800-432-5378 and mention code 5804 or visit http://www.medicalert.org/dvt to save $10. The $10 discount applies to new Advantage membership enrollment (reg. $39.95) and is valid through March 31, 2010. Choose from over 100 styles of IDs, starting as low as $9.95. IDs not included in the enrollment fee.

The APS Foundation of America, Inc does not make commissions or profits from the Medic Alert. This is being posted purely as a courtesy to you, as an APS patient.

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, Medic Alert

From the Desk of Silvia S. Pierangeli, Ph.D, Chair, APLA 2010

2010-03-05T12:44:00.001-06:00

Dear APS patients:

We are organizing the 13th International Congress of Antiphospholipid antibodies in Galveston, TX, from April 13th-16th, 2010. We have secured outstanding speakers from all over the world that will contribute to an exceptional scientific program.

Importantly, this year we will have two patients/doctors forum discussion groups. Prof. Munther Khamashta (St Thomas’ Hospital, London, UK) and Prof. Michael D. Lockshin (Hospital for Special Surgery, New York, NY) will conduct those sessions.

Attendance/participation is free for patients. If you wish to register please check our website:
http://www.utmb.edu/apla2010.

Also patients can participate in the scientific sessions of the congress at a special reduced registration fee. Check the website for details.

Accommodation/housing registration information is also available through the website.

Schedule of Patient/Doctors Forum at APLA 2010:

Date/Time Event
Wednesday April 14th, 2010
5:00 PM – 6:30 PM
Patients and Doctors Forum: Prof. Munther Khamashta

Date/Time Event
Thursday April 15th, 2010
5:00 PM – 6:30 PM
Patients and Doctors Forum: Prof. Michael Lockshin

If you have any questions, please do not hesitate to contact us sspieran@utmb.edu or loterrel@utmb.edu.

We hope to see you in Galveston this coming April!

Silvia S. Pierangeli, Ph.D,
Chair, APLA 2010

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, conference, Galveston, Congress, UTMB

Faces of APS - The APSFA Needs YOUR Help!

2009-12-06T11:44:00.001-06:00

The APSFA is looking for people to submit their photos for "The Faces of APS". Details in the .pdf linked below. Please help us bring awareness to this disease to main stream media!

Deadline: January 4, 2010

http://www.apsfa.org/docs/Faces%20of%20APS.pdf

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, faces

FALL/WINTER 2009 volume of our quarterly newsletter, "Antiphospho...What??" is Available

2009-11-21T11:25:00.000-06:00

The FALL/WINTER 2009 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol15FallWinter2009.pdf

The next volume will be coming out in late Winter, early Spring, 2010.

Please let us know if there are any topics that you'd like our Medical Advisors to cover in their articles. We try to request topics that people are emailing about or that are discussed on our the forum. So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisors.

We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.

We could also use articles written by medical professionals or medical students. Please contact us if you are interested.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter

Exclusive 2009 APSFA Holiday Ornament

2009-11-16T19:53:00.003-06:00

Our EXCLUSIVE holiday snowflake ornament is now available for purchase in our Cafepress store. This is the 4th in the series and each one is unique! We picked the snowflake to be the symbol on this special ornament because like there are no two snowflakes that are alike, no two APS patients are alike!

Purchase this ornament here: http://www.cafepress.com/apsfoundation/1952386

2009 APSFA Giving Tree

2009-11-15T10:36:00.000-06:00

We are excited to announce the arrival of our 4th Annual Holiday Giving Tree!

This tree holds a special meaning for the members of the APS Foundation of America, Inc and the community it serves. Since the Giving Tree has been such a big success in the past, we've made it an annual tradition.

How the tree works: When you make a donation using the chart below the tree, you get to chose an ornament or present that coincides with the amount you wish to donate. We will then trim the tree with the ornaments selected. By the end of the season we will have a beautifully decorated tree due to your generous donations!

As in the past, the ornaments are one of a kind and we even have new presents this year!

All Giving Tree donations are tax deductible and need to be made by 12/31/09 to be included for 2009.

Thank you for your consideration and generosity this holiday season!

To make a donation and add an ornament to our tree click here: http://www.apsfa.org/givingtree.htm

`Wipeout' TV show player with rare condition dies

2009-11-13T15:09:00.004-06:00

`Wipeout' TV show player with rare condition dies
Thu Nov 12, 7:03 pm ET

LOS ANGELES – A contestant who was hospitalized after competing briefly on the game show "Wipeout" died two weeks later of a stroke apparently caused by a rare condition, his father said.

Tom Sparks, 33, was participating in the first segment of an obstacle course Oct. 19 when he complained of knee pain, according to Endemol, the company which produces "Wipeout" for ABC.

Producers had him stop, Endemol said Thursday. On-set medics examined Sparks, noticed he was short of breath and took him to a local hospital.

He was moved to Cedars-Sinai Medical Center and underwent several brain surgeries, according to TheWrap.com, which first reported Sparks' Nov. 5 death.

Sparks couldn't be saved because of the brain damage that had occurred, the Web site said, citing an e-mail to alumni from a faculty member at Sparks' alma mater.

Sparks, a former Sun Valley, Idaho, radio disc jockey, earned a bachelor's degree from the University of Southern California and later earned a master's degree from the USC Annenberg School for Communication & Journalism.

In a statement to the Idaho Mountain Express and Guide, Bill Sparks, his father, said doctors determined the stroke probably was caused by antiphospholipid antibody syndrome, known as APS.

APS is associated with recurrent clotting events including premature stroke and heart attack, according to the APS Foundation of America Inc.'s Web site.

"Wipeout" contestants undergo medical examinations before they are cleared for the show, Endemol said. However, the diagnosis of APS requires specialized blood tests, the foundation said on its site.

"We offer our heartfelt condolences to the family," ABC and Endemol said in a joint statement. "This is a tragic loss and our thoughts are with them at this time."

Sparks, who was a runner and recently competed in a marathon, had just married and was competing on "Wipeout" with his wife, Kate, on a couples episode. The show is in production for the third season, premiering next summer.
___

On the Net:
http://www.apsfa.org/
http://www.abc.go.com

Story URL: http://news.yahoo.com/s/ap/20091113/ap_en_tv/us_tv_wipeout_player_dies

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, wipeout, tom sparks

2009 H1N1 Flu (referred to as “swine flu” early on) and Seasonal Flu Information for People with Inflammatory Arthritis or Rheumatic Disease

2009-10-23T16:56:00.000-05:00

2009 H1N1 Flu (referred to as “swine flu” early on) and Seasonal Flu Information for People with Inflammatory Arthritis or Rheumatic Disease

October 15, 2009, 11:00 AM ET

How does arthritis affect how I respond to the flu?

People with certain types of arthritis, called inflammatory or systemic arthritis or autoimmune rheumatic disease, have a higher risk of getting flu-related complications, such as pneumonia. Inflammatory arthritis affects the immune system which controls how well your body fights off infections. Also, many medications given to treat inflammatory arthritis can weaken the immune system. People with weakened immune systems are at high risk for getting more severe illness and complications such as hospitalization with the flu. Rheumatoid arthritis and lupus are the most common types of inflammatory arthritis.

People with osteoarthritis, also called degenerative arthritis, are likely not at increased risk of complications from the flu unless they also have other high-risk conditions for flu such as asthma, diabetes, heart disease, or cancer.

If you have one of these types of inflammatory arthritis, you may be at high risk for complications from the flu. You should discuss your risk for complications from the flu with your healthcare provider.

Types of Inflammatory Arthritis

Rheumatoid arthritis (RA)
Systemic lupus erythematosus (SLE)
Psoriatic arthritis
Anti-phospholipid syndrome
Polymyalgia rheumatica
Systemic sclerosis/scleroderma
Spondyloarthropathies
Sjögren’s syndrome
Polymyositis/dermatomyositis
Vasculitis (e.g giant cell arteritis)
Necrotising arteritis
Sarcoidosis
Polyarteritis nodosa

If you are taking one or more of these medications for your arthritis, you may be at high risk for getting the flu or complications from the flu. Note: This list applies to medications that are ingested or injected and does NOT include medications that are applied to the skin such as creams and ointments. Your healthcare provider can clarify if the medications that you take weaken the immune system.

Arthritis medications that weaken the immune system

Steroids (corticosteroids) taken by mouth or intravenously, not applied to the skin or injected into a joint.
prednisone (Deltasone, Orasone, Prednicin-M, Sterapred)
prednisolone (Prelone)
methlyprednisone (Medrol)
hydrocortisone (Cortef, Hydrocortone)
dexamethasone (Decadron, Hexadrol))
cortisone acetate (Cortone)
betamethasone (Celestone)
DMARDs (disease-modifying antirheumatic drugs)
methotrexate (Rheumatrex, Trexall)
azathioprine (Imuran, Azasan)
hydroxychloroquine (Plaquenil)
leflunomide (Arava)
sulfasalazine (Azulfidine)
minocycline (Minocin, Dynacin)
cyclosporine (Sandimmune, Neoral, Gengraf)
mycophenolate mofetil (Cellcept)
gold (Auranofin, Ridaura, Myochrysine)
chlorambucil (Leukeran)
cyclcophosphamide (Cytoxan)
Biological response modifiers (biologics)
etanercept (Enbrel)
infliximab (Remicade)
adalimumab (Humira)
anakinra (Kineret)
abatacept (Orencia)
rituximab (Rituxan)
tacrolimus (Prograf, FK-506, fujimycin)

What are the symptoms of the flu?

The symptoms of 2009 H1N1 flu virus in people are similar to the symptoms of seasonal flu and include fever, cough, sore throat, runny or stuffy nose, body aches, headache, chills, and fatigue. Some people may have vomiting and diarrhea. People may be infected with the flu, including 2009 H1N1, and have respiratory symptoms without a fever.

How can I avoid getting and the flu or giving the flu to others?

The flu is spread from person-to-person by coughing or sneezing by people with influenza. Sometimes people may become infected by touching something – such as a surface or object – with flu viruses on it and then touching their mouth or nose. You can take simple actions to protect yourself and others from getting the flu:

Get a seasonal flu shot now and the 2009 H1N1 flu shot when it becomes available.
Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it.
Wash your hands often with soap and water, especially after you cough or sneeze. Alcohol-based hand cleaners are also effective.
Avoid touching your eyes, nose, or mouth. Germs spread this way.
Try to avoid close contact with sick people.
If you are sick with flu-like illness, seek medical care early. Your health care provider can determine if you need to be treated with antiviral medication.
Keep away from others as much as possible to keep from making others sick. CDC recommends that you stay home for at least 24 hours after your fever is gone except to get medical care or for other necessities. Your fever should be gone without the use of a fever-reducing medicine.

Is there a vaccine against the 2009 H1N1 flu virus and who is it available for?

Yes. A vaccine for the 2009 H1N1 flu has been developed and will be available beginning mid-October 2009. People with inflammatory arthritis within any of the following prioritized groups are recommended to receive the 2009 H1N1 vaccine when it first becomes available:

Pregnant women
People who live with or care for children younger than 6 months of age
Healthcare and emergency medical services personnel
Persons between the ages of 6 months and 24 years old
Persons between the ages of 25 and 64 years old who are at higher risk for 2009 H1N1 because of chronic health disorders or compromised immune systems (including with inflammatory arthritis)

Persons age 65 or older (including those with inflammatory arthritis) are not included in these prioritized groups because current studies indicate that the risk for 2009 H1N1 flu infection among persons age 65 or older is less than the risk for younger age groups. We do not expect that there will be a shortage of 2009 H1N1 vaccine, but availability and demand can be unpredictable. Once the demand for vaccine among the younger groups has been met, however, people age 65 or older with inflammatory arthritis should receive the 2009 H1N1 flu shot.

Do I need to get a flu shot?

Yes, CDC recommends certain persons with weakened immune systems, which includes people with inflammatory arthritis, get flu shots.
People with inflammatory arthritis should get—

A seasonal flu shot every year. These are available beginning in September.
The new 2009 H1N1 flu shot when available (see question above). These will begin to be available in mid-October 2009.

People living with inflammatory arthritis should get the "flu shot"— an inactivated vaccine (containing fragments of killed influenza virus) that is given with a needle, usually in the arm. The flu shot is approved for use in people inflammatory arthritis.

The other type of flu vaccine — nasal-spray flu vaccine (sometimes called LAIV for “live attenuated influenza vaccine)—is not currently approved for use in people with inflammatory arthritis. This vaccine is made with live, weakened flu viruses that do not cause the flu). LAIV (FluMist®) is approved for use in healthy people 2-49 years of age.

What should I do when I am sick?

If you develop flu-like symptoms contact your healthcare provider.
Avoid contact with others. You should stay home and avoid travel, including not going to work or school, until at least 24 hours after your fever is gone except to get medical care or necessities. Your fever should be gone without using fever-reducing medications.
If you leave the house to seek medical care, wear a facemask, if available and tolerable, and cover your coughs and sneezes with a tissue.
Do not stop taking any medicine you take for your arthritis unless told to do so by your physician.
Seek medical attention early if you develop symptoms of the flu. Treatment is available for persons with severe disease and those at high risk for complications. Persons with inflammatory arthritis are considered high risk for complications from the flu; therefore, your health care provider may choose to prescribe antiviral medications for you if you get the flu.
If you are exposed to someone who has flu, consult your health care provider. They may prescribe medication to help prevent you from getting the flu or watch you closely to see if you develop flu symptoms.

For more information:

H1N1 Flu: General information
http://www.cdc.gov/h1n1flu/general_info.htm

Arthritis Foundation Flu: What People with Arthritis Should Know*
http://www.arthritis.org/the-flu.php

H1N1 Advisory for People with Lupus*
http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=2681&zoneid=99

Lupus and Influenza Vaccines*
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnliving.aspx?articleid=2688&zoneid=527

* Links to non-Federal organizations are provided solely as a service to our users. Links do not constitute an endorsement of any organization by CDC or the Federal Government, and none should be inferred. The CDC is not responsible for the content of the individual organization Web pages found at this link.

http://www.cdc.gov/h1n1flu/arthritis.htm

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, H1N1, flu, swine

Volume 14 of the APSFA Newsletter - "Antiphospho...What?"

2009-08-17T12:00:00.001-05:00

Hello!!

The SUMMER/FALL 2009 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol14SumFall09.pdf

The next volume will be coming out in late Fall, early Winter 2009.

Please let us know if there are any topics that you'd like our Medical Advisors to cover in their articles. We try to request topics that people are emailing about or that are discussed on our the forum. So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisors.

We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.

Thank you to those people who have submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.

We could also use articles written by medical professionals or medical students. Please contact us if you are interested.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Thank you for your continued support!

Preventing Miscarriages

2009-07-09T15:15:00.001-05:00

On June 25th, Judy Smith did an interview with Fox News in Tampa Bay. Judy has had several miscarriages and at one point thought she had MS. It wasn't until her Dr. did a simple blood test that revealed she had a potentially life threatening illness called APS.

She can not stress the importance of the APS Foundation of America, Inc (http://www.apsfa.org), and how it has played a part in helping her cope with this disease. Not only do they have a support group for others with APS, but they are the only "United States nonprofit health agency dedicated specifically to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, and young strokes and heart attacks."

"Knowing more about APS can make all the difference. Get in the Know and Get in the Flow!"

Please watch this video as it may help someone you know.

http://www.myfoxtampabay.com/dpp/health/doctor_jo/Preventing_miscarriages_070809

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS

Signs and Symptoms of Antiphospholipid Antibody Syndrome: Get in the Know and Get in the Flow!

2009-06-22T13:39:00.002-05:00

FOR IMMEDIATE RELEASE

Date: 06/22/2009
Contact: Christina "Tina" Pohlman
Phone: 608-782-2626
Website Address: www.apsfa.org
Email Address: apsfa@apsfa.org

Signs and Symptoms of Antiphospholipid Antibody Syndrome: Get in the Know and Get in the Flow!

The Antiphospholipid (APS) Antibody Syndrome Foundation of America, Inc. (APSFA) urges the public, as well as the medical community, to learn more about this rare disease. APS Awareness Month runs throughout June.

APS is an autoimmune disorder. Such illnesses occur when the body’s tissues are attacked by its own substances. In APS, the body recognizes certain components of blood or cell membranes as foreign substances and produces antibodies--a specialized protein the body uses to prevent infection--against them. It is the major cause of strokes in persons under 40 years old, blood clots (thrombosis) – which can lead to heart attack or stroke – vision disturbances and repeated, otherwise unexplainable miscarriages.

While more general practitioners have become familiar with APS in the last few years, many physicians – and most of the public – are still unfamiliar with both its symptoms and the damage it can cause.

People who arrive at emergency rooms and doctor’s offices with the following issues should be tested for APS:

• Heart attacks and strokes in those under 50
• Transient ischemic attacks, known as “mini-strokes.” TIAs last 10 minutes or less and leave no permanent damage.
• Multiple miscarriages and stroke
• Blood clots in the lung (called pulmonary emboli) or deep veins in arms and legs (called deep vein thrombosis, or DVT)
• Diminishing mental alertness, such as loss of concentration, memory loss and difficulty with reading comprehension
• Migraine headaches
• Partial or total vision loss
• Dizziness
• Seizures

APS shares symptoms with more well-known disorders such as multiple sclerosis and lupus. Diagnosis and treatment delays can cause serious, sometimes fatal complications. A simple blood test can determine whether someone has APS.

The APS Foundation of America, Inc. is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization dedicated to spreading awareness and support to those with the disease.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626 Website Address: www.apsfa.org. Email Address: apsfa@apsfa.org

###

Public Service Announcement for Week 4:
http://www.youtube.com/watch?v=GRiK_CncGyU

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, PSA

APS Often the Culprit Behind Heart Attack and Stroke in Younger Adults

2009-06-15T15:11:00.001-05:00

FOR IMMEDIATE RELEASE

Date: 06/15/2009
Contact: Christina "Tina" Pohlman
Phone: 608-782-2626
Website Address: www.apsfa.org
Email Address: apsfa@apsfa.org

APS Often the Culprit Behind Heart Attack and Stroke in Younger Adults

A heart attack generally occurs when a coronary artery clot blocks the supply of blood and oxygen to heart muscle. There are more than one million heart attack sufferers annually in the U.S.; about half of those stricken die. Unfortunately, many heart attack victims wait two hours or more after symptoms begin before they seek medical help. This delay can result in death or lasting heart damage.

A stroke, or "brain attack," occurs when blood circulation to the brain fails. Brain cells can die from decreased blood flow and the resulting lack of oxygen. There are two broad categories of stroke: those caused by a blockage of blood flow (called “ischemic” strokes) and those caused by bleeding. Ischemic strokes account for about 80 percent of all strokes. They usually are not fatal.

A transient ischemic attack, or TIA, is an ischemic stroke that occurs when the brain’s blood supply is interrupted briefly (10 minutes or less). There generally is no lasting damage, but recent research shows that about half of people who experience a TIA have a full-blown stroke within 24 hours.

APS is the leading cause of heart and brain attacks in people under 50. If you have a personal or family history of heart attack or stroke before age 50, ask your primary care physician to test you for APS. It requires only a simple blood test.

The APS Foundation of America is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization dedicated to spreading awareness and support to those with the disease.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626 Website Address: www.apsfa.org Email Address: apsfa@apsfa.org

###

Public Service Announcement for Week 3:
http://www.youtube.com/watch?v=63-5f0G9CCA

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS

Press Release: APS Linked to Birth Difficulties (2009)

2009-06-09T12:40:00.001-05:00

FOR IMMEDIATE RELEASE

Date: 06/8/2009
Contact: Christina "Tina" Pohlman
Phone: 608-782-2626
Website Address: www.apsfa.org
Email Address: apsfa@apsfa.org

APS Linked to Birth Difficulties

The Antiphospholipid Antibody Syndrome Foundation of America, Inc. (APSFA) urges the public, as well as the medical community, to learn more about this rare disease. APS Awareness Month runs throughout June.

APS is an autoimmune disorder. Such illnesses occur when the body’s tissues are attacked by its own substances. In APS, the body recognizes certain components of blood or cell membranes as foreign substances and produces antibodies--a specialized protein the body uses to prevent infection--against them. It is the major cause of strokes in persons under 40 years old, blood clots (thrombosis) – which can lead to heart attack or stroke – vision disturbances and repeated, otherwise unexplainable miscarriages.

Even otherwise-healthy women are at higher risk of developing blood clots and preeclampsia, a blood pressure disorder that occurs only during pregnancy. In women with APS, blood clots can form in the placenta and starve the baby of nutrition. Placental clots can cause fetal growth problems and distress, premature birth, or miscarriage. Some women with APS have difficulty becoming pregnant at all.

Babies born to women with APS often are delivered between 30 to 35 weeks gestation, or about 5 to 10 weeks early. Low birth weight – between 3 to 5 pounds – is not uncommon, although the babies generally are healthy and thrive after delivery.

Physicians often suggest that women of childbearing age who also are susceptible to blood clots remain indefinitely on a course of low-dose aspirin therapy. Aspirin is a readily available, inexpensive drug to help guard against blood clots. As with gestational diabetes, in which the illness resolves itself once the baby is delivered, it is possible for some women with clotting issues during pregnancy to return to full health post-birth.

APS can be diagnosed with a simple blood test. It frequently is found in conjunction with lupus, another autoimmune disorder that primarily targets women.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

The APSFA is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization.

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626 Website Address: www.apsfa.org. Email Address: apsfa@apsfa.org

###

Public Service Announcement for Week 2:
http://www.youtube.com/watch?v=z2snb2bXUEI

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

2009-06-01T13:11:00.000-05:00

FOR IMMEDIATE RELEASE

Date: 06/01/2009
Contact: Christina "Tina" Pohlman
Phone: 608-782-2626
Website Address: www.apsfa.org
Email Address: apsfa@apsfa.org

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

The Antiphospholipid Antibody Syndrome (APS) Foundation of America, Inc. (APSFA) urges the public, as well as the medical community, to learn more about this rare disease. APS Awareness Month runs throughout June.

APS is an autoimmune disorder. Such illnesses occur when the body’s tissues are attacked by its own substances. In APS, the body recognizes certain components of blood or cell membranes as foreign substances and produces antibodies--a specialized protein the body uses to prevent infection--against them. It is the major cause of strokes in persons under 40 years old, blood clots (thrombosis) – which can lead to heart attack or stroke – vision disturbances and repeated, otherwise unexplainable miscarriages.

APS often is found in conjunction with lupus, another autoimmune disorder that primarily targets women.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

The APSFA is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization.

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626
Website Address: www.apsfa.org. Email Address: apsfa@apsfa.org

###

Public Service Announcement for Week 1

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, PSA

Antiphospholipid Syndrome (APS) Education

2009-05-23T20:58:00.000-05:00

Michael D. Lockshin, MD

Attending Rheumatologist, Hospital for Special Surgery
Professor of Medicine, Weill Cornell Medical College
Director, Barbara Volcker Center for Women and Rheumatic Disease

In this presentation, Dr. Lockshin provides an explanation of antiphospholipid syndrome (APS) and how it can be treated. He then answers questions submitted by patients in attendance.

http://www.hss.edu/conditions_antiphospholipid-syndrome-education.asp

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS

Volume 13 of the APSFA Newsletter - "Antiphospho...What?" is NOW Available!

2009-05-21T21:22:00.001-05:00

Hello!!

The SPRING/SUMMER 2009 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol13SprSum2009.pdf

The next volume will be coming out in late Summer, early Fall, 2009.

Please let us know if there are any topics that you'd like our Medical Advisors to cover in their articles. We try to request topics that people are emailing about or that are discussed on our the forum. So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisors.

We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.

Thank you to those people who have submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.

We could also use articles written by medical professionals or medical students. Please contact us if you are interested.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Thank you for your continued support!

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS

Antiphospholipid Antibody Syndrome (APS) Workshop

2009-04-15T19:23:00.003-05:00

Who: Hospital for Special Surgery

What: Antiphospholipid Antibody Syndrome (APS) Workshop

Where: 535 East 70th Street, New York City

When: Thursday April 30, 2009 from 6:00PM - 8PM EST

Why: APS can affect any organ, potentially causing blood clots, strokes, miscarriages, or other symptoms. It can occur alone or may be associated with an immune disorder like lupus.

For More Information: Call 212-774-7326

To Register: Click here: http://www.hss.edu/pped.asp

This one-session workshop provides an essential overview of diagnosis and treatment, and the opportunity to share your experiences with others coping with APS.

Speakers will be Michael Lockshin, MD and Jillian Rose, LMSW

The APS Foundation of America, Inc will have materials present.

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS

New Cafe Press Graphics & Gear - Check It Out!

2009-04-09T18:13:00.000-05:00

We just added several new designs in our CafePress store. If there's a design you like and it's not on an item (like a button, hat, sticker...etc) please email Heidii at heidi@apsfa.org and she will add it. Our Cafe Press Store is located here: http://www.cafepress.com/apsfoundation

100% of the profits from these products will go to the APS Foundation of America, Inc. APS Stands for Antiphospholipid Antibody Syndrome, which is a blood disorder that causes blood clots, strokes in young people and multiple miscarriages in women. The APS Foundation of America, Inc. is dedicated to fostering and facilitating joint efforts in the areas of education, public awareness, research and patient services in an effective and ethical manner. Thanks for looking!

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS

The Antiphospholipid Story

2009-03-24T17:42:00.002-05:00

The Antiphospholipid Story
DONATO ALARCÓN-SEGOVIA, MD, MS, PhD,
Investigator,
Department of Immunology and Rheumatology,
Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán,
Vasco de Quiroga 15, 14000 Mexico DF, Mexico.
Address reprint requests to Dr. Alarcón-Segovia.
J Rheumatol. 2003 Sep;30(9):1893-6.
________________________________________
Throughout the history of humanity, and except for a few contributions by true pioneers, each bit of new knowledge or new development has been based on the work of many others, often unknown, who have helped build the corresponding edifice. Each milestone takes up so many yards, inches, centimeters, or millimeters according to the relative importance of the apparent new knowledge. However, the lack of even an apparently millimetric step, in this same sense, might prevent reaching the milestone. Stephenson may not have thought about it, but his invention of the railroad steam engine was only possible because throughout history people had learned to harness fire, including the unknown primitive humans who first learned to produce and keep it.
I will attempt to recount the saga of the antiphospholipid syndrome (APS), including my own experiences, with the precision of the scientist, the insight of one who has lived through it, and the emotion of one who sees in this story a wonderful example of the sum of contributions made for the sake of knowledge and helping fellow humans. Interest in this topic should not falter if we are to understand it fully, and with this understanding be able to provide our patients with a definitive solution.
I would like to take you as far back as 1906, to Wassermann and his coworkers1, who developed serological reactions for the diagnosis of syphilis utilizing phospholipid-rich tissues as antigens, later to be termed cardiolipin by Pangborn (1941)2. The finding of individuals who were positive for these reactions, but who were either too pious or too young to be suspected of having acquired syphilis, first brought about the possibility of false positive serological reactions for this disease, and tests were developed to distinguish these from the true positive reactions.
The first milestone resulted from the attempt to determine who, and perhaps why, some individuals had such false positive reactions for syphilis, and the finding that the majority were women who, when followed by Moore and Lutz (1955)3 for enough time, developed systemic lupus erythematosus (SLE). Interestingly, 3 of their 21 lupus patients with antecedent false positive tests for syphilis had had major unexplained thrombophlebitis. Here we should acknowledge the contributions, albeit indirect, of Hargraves, Richmond, and Morton (1948)4, who found LE cells that permitted a more ample diagnosis of SLE, and of Edmund Dubois (1953)5, who helped us recognize its wider clinical spectrum.
The second milestone resulted from the search for the cause of bleeding in a patient by Conley and Hartmann (1952)6, with the resulting finding of an inhibitor of coagulation that was subsequently related by Sánchez-Medal and Lisker (1959)7 from our own institute to patients with SLE, most of whom did not bleed.
The paradox encountered by Bowie and his coworkers (1963)8 of a frequent occurrence of thrombosis, rather than bleeding, in patients with SLE who had this inhibitor of coagulation, subsequently termed lupus anticoagulant by Feinstein and Rapaport (1977)9, marks the initiation of the concept of APS, particularly when somewhat later Thiagarajan, et al (1980)10, found that at least some of the lupus anticoagulants actually were antiphospholipid antibodies (aPL).
Shortly after the study of Bowie and his coworkers, and stemming from the same institution, Alarcón-Segovia and Osmundson (1965)11 described 11 patients with SLE who had peripheral vascular syndromes. Some of these are particularly interesting: one had chronic ulcers of the legs and livedo reticularis, clinical manifestations later found to be associated with aPL, and both circulating anticoagulant and false positive serologic tests for syphilis; another patient had had 4 miscarriages, thrombophlebitis, livedo reticularis, thrombosis of the left ulnar artery, convulsions, and long-standing false positive tests for syphilis; a third patient had false positive tests for syphilis, recurrent superficial thrombophlebitis, leg ulcers, intermittent claudication with evidence of popliteal artery occlusion, a vascular lesion of the brain stem, and a terminal occlusion of a basilar artery.
Shortly thereafter (1967) in a letter to Lancet, I insisted on the association of a circulating anticoagulant with infarction rather than bleeding12. Somewhat later (1974) Johansson and Lassus13 would indicate the concurrent findings of circulating anticoagulants and false positive tests for syphilis as in our described patient.
In 1980 Soulier and Boffa14 recorded the occurrence of recurrent abortions, thromboses, and a circulating anticoagulant in patients not having a primary condition, and in 1981 Carreras and his coworkers15 studied the possible role of inhibition of prostacyclin formation by the lupus anticoagulant in the causation of thrombosis.
The next milestones in the antiphospholipid story resulted from the development of more sensitive tests for aPL: in 1980 radioimmunoassays by Smolarsky16, by Harris and coworkers in 198317, and more practical, an ELISA developed by Loizou and his coworkers, using cardiolipin as antigen (1985)18. The more ample use of these tests permitted Hughes19 to propose the occurrence of an anticardiolipin syndrome in patients with SLE (1985). In some of his writings at that time Hughes mentioned that there were some patients with this syndrome who had no lupus, but he did not actually describe such patients.
The notion that within SLE there might be patients with a set of manifestations caused by one of their multiple autoantibodies and thus have a specific syndrome seemed interesting enough to me to try to confirm it. I therefore wrote Graham Hughes requesting some specific instructions on their anticardiolipin ELISA. I obtained a prompt response from Nigel Harris with instructions as well as anticardiolipin positive sera. Carmen Oria, a Venezuelan chemist working in our laboratory, was then able to reproduce the method, with modifications (1988)20. Meanwhile, with the help of Margarita Delezé, an enthusiastic rheumatologist who had come to our department after her hospital was destroyed in the 1985 Mexico City earthquake, we had started a cohort of consecutive lupus patients who were to be repeatedly tested for anticardiolipin antibodies. When the cohort reached 500 patients with a mean followup of more than 7 months and at least 5 antiphospholipid antibody tests of IgG, IgM, and/or IgA isotypes, we published our results21 confirming the existence of an APS in patients with SLE and documenting the clinical manifestations associated with high levels of aPL (1989). We would subsequently extend our cohort to 667 lupus patients, and after 3.5 years of followup, we proposed classification criteria for the APS (1992)22. Consensus criteria for the APS were later proposed (1999)23.
Analyzing our findings in the initial cohort of the 500 lupus patients, it became clear to me that there were patients who had the same clinical manifestations and high concentrations of anticardiolipin antibodies but who had no other clinical or serologic evidence of SLE. A search of the literature did not reveal any descriptions of this, although there were isolated reports of patients with some of these manifestations and those who had a circulating anticoagulant, as also described by Soulier and Boffa, whom we cited14.
With the help of Jorge Sánchez-Guerrero I prepared a description of 9 patients with what we termed primary antiphospholipid syndrome. Eventually, after some unexpected delays, on September 12, 1988, we submitted our manuscript to The Journal of Rheumatology; it was ultimately published early in 1989, and became one of its most highly cited articles24. At the end of 1988, however, Asherson published an editorial on the same topic in The Journal25. It was supposed to have accompanied our paper.
About 3 months later a paper by Mackworth-Young and coworkers appeared describing a series of patients with the same syndrome26, and later in the same year a larger multicenter series coordinated by Asherson was also published27. Our paper24 was already cited in their publication27. On July 5, 1993, Graham Hughes and I shared the Ciba-Geigy–International League Against Rheumatism Award, given to us at its international congress in Barcelona, for our contributions to knowledge on the APS.
A further milestone was reached in 1990 at the antiphospholipid meeting in Sirmione, Italy, when Monica Galli proposed that antibodies detected by ELISA tests with cardiolipin as antigen were not directed to the phospholipid but to a protein cofactor present in the bovine serum used to block the plates. This was supported by Steven Krilis, who had actually determined that the protein cofactor was ß2-glycoprotein-I (ß2-GPI), which had natural anticoagulant properties and high affinity for anionic molecules such as cardiolipin. Moreover, as noted by Takao Koike, pathogenic antibodies can be distinguished from those present in infectious disease (e.g., syphilis). The pathogenic antibodies require the presence of bovine serum with such cofactor, the infectious antibodies do not, he said. The corresponding articles were published that same year (1990)28-30.
At a ß2-GPI symposium in Milan in 1992, Cabral and his coworkers described the presence of anti-ß2-GPI antibodies in a group of patients with primary APS31; this finding was also published by Viard, et al that year32. That these antibodies may have the most important role in the causation of the APS, particularly its thrombotic component, was evidenced by their systematic fall at the time of thrombosis, as found by Gómez-Pacheco and coworkers33 in 1999.
An important study by Matsuura, Koike, and their coworkers34 (1995) revealed that the so-called anticardiolipin antibodies could bind to ß2-GPI in the absence of cardiolipin if the ELISA plates were oxidized by irradiation. This procedure was considered by Roubey and coworkers in 199535 to cause higher antigen density and permit bivalent binding. In 1995 Cabiedes, et al36 found that manifestations of APS associated more strongly with antibodies to ß2-GPI determined in non-irradiated plates versus those with anticardiolipin, and Cabral, myself, and our respective coworkers subsequently (1996, 1997)37 described groups of patients with clinical manifestations of APS who had persistently negative anticardiolipin antibodies when studied in conventional assays, but persistently positive anti-ß2-GPI antibodies determined in non-irradiated plates.
In 1988, early in the antiphospholipid story, I began inquiring about the pathogenic potential of aPL in an editorial38, and participated in a series of studies on their role in deficiencies of natural anticoagulants, headed by Guillermo and Alejandro Ruiz-Argüelles (1989)39, in a study by Vázquez-Mellado, et al (1994)40 on their role in thrombocytopenia by recognizing ß2-GPI that had bound to anionic phospholipids switched to the outer leaflet of platelets upon their activation or aggregation, as well as in a study by Cabral, et al41, where we found a role for an IgM natural autoantibody to phosphatidylcholine in the causation of hemolytic anemia (1990).
The synergism between aPL and antiendothelial cell antibodies in the causation of vascular damage in the APS began to be explored by Meroni and coworkers (1992)42, and a potential role of aPL in the causation of atherosclerosis stemmed from the seminal work by Vaarala and coworkers on the crossreactivity between anticardiolipin antibodies with oxidized low density lipoprotein (1993)43.
But perhaps the most important milestone for determining the pathogenicity of antiphospholipid antibodies came with the elegant series of studies by Shoenfeld and his group (1991)44,45, i.e., animal models of the APS induced both by passive and by active immunization, as well as their therapeutic manipulation (1999)46. In addition, these workers identified a hexapeptide that is recognized specifically by pathogenic anti-ß2-GPI antibodies and by antibodies produced on immunization of mice with microbial preparations. Naive mice infused with the antipeptide antibody produced by these immunizations developed clinical evidence of an antiphospholipid syndrome, indicating that molecular mimicry elicited by infections may lead to the development of pathogenic anti-ß2-GPI antibodies reactive with this peptide (2002)47.
The presence of autoreactive interleukin 6 producing CD4+ T cell clones to ß2-GPI in patients with APS was recently identified by Kuwana and his group (2001). These cells recognized at least 4 different epitopes, but the majority recognized a 15 amino acid peptide in the phospholipid-binding fifth domain. Most of these T cells stimulated autologous blood B cells to promote anti-ß2-GPI production in the presence of recombinant ß2-GPI. In a subsequent study they found that such autoreactive T cells had restricted T cell receptor ß-chain usage (Vß7 and Vß8) (2002)48.
Some of these findings may have implications regarding potential forms of treatment. Other avenues of treatment reside in the induction of tolerance of anti-ß2-GPI-producing B cells or in anionic blockade of the phospholipid-binding sites of ß2-GPI by means of heparin or other compounds, as proposed by Guerin and coworkers (2002)49.
Before the concept of an antiphospholipid syndrome originated, lupus patients with venous occlusions and particularly those with arterial occlusions were treated mainly with corticosteroids and immunosuppressives. In addition, patients with primary APS were often diagnosed as lupus and met classification criteria for this disease. This could have been considered reasonable were it not for the unnecessary steroid treatment they received instead of merely anticoagulant and/or platelet antiaggregant treatment.
We have come a long way in our understanding of the antiphospholipid syndrome. In looking back, I cannot help but feel that the wheels of the antiphospholipid story are turning more slowly, and at times even seem to stop. It might be only natural that the previous large scope of studies would now tend to be reduced. However, many unknowns await our renewed vigor. Only with vigor can we attain a brighter future for our patients.
REFERENCES
1. Wasserman A, Neisser A, Bruck C. Eine serodiagnostiche reaktion bei syphilis. Dtsch Med Wochenschr 1906;32:745-9.
2. Pangborn MC. A new serologically active phospholipid from beef heart. Proc Soc Exper Biol Med 1941;48:484-6.
3. Moore JE, Lutz WB. Natural history of systemic lupus erythematosus: approach to its study through chronic biologic false positive reactors. J Chron Dis 1955;1:297-316.
4. Hargraves MM, Richmond H, Morton R. Presentation of 2 bone marrow elements: the "Tart" cell and the "LE" cell. Proc Staff Meet Mayo Clin 1948;23:25-8.
5. Dubois EL. Effect of LE cell on clinical picture of systemic lupus erythematosus. Ann Intern Med 1953;93:1265-94.
6. Conley CL, Hartmann RC. A hemorrhagic disorder caused by circulating anticoagulant in patients with disseminated lupus erythematosus. J Lab Clin Invest 1952;31:621-2.
7. Sánchez-Medal L, Lisker R. Circulating anticoagulants in disseminated lupus erythematosus. Br J Haematol 1959;5:284-93.
8. Bowie EJ, Thompson JH Jr, Pascuzzi CA, Owen CA Jr. Thrombosis in systemic lupus erythematosus despite circulating anticoagulants. J Lab Clin Med 1963;62:416-30.
9. Feinstein DI, Rapaport SI. Acquired inhibitors of blood coagulation. Prog Hemostas Thromb 1972;1:75-95.
10. Thiagarajan P, Shapiro SS, De Marco L. Monoclonal immunoglobulin M lambda coagulation inhibitor with phospholipid specificity. Mechanism of lupus anticoagulant. J Clin Invest 1980;66:397-405.
11. Alarcón-Segovia D, Osmundson PJ. Peripheral vascular syndromes associated with systemic lupus erythematosus. Ann Intern Med 1965;62:907-19.
12. Alarcón-Segovia D. Infarction and circulating anticoagulant. Lancet 1967;2:43-4.
13. Johansson EA, Lassus A. The occurrence of circulating anticoagulants in patients with syphilitic and biologically false positive antilipoidal antibodies. Ann Clin Res 1974;6:105-8.
14. Soulier JP, Boffa MC. Avortements á repetition, thromboses et anticoagulant circulant antithromboplastine. Nouv Presse Med 1980;9:859-64.
15. Carreras LO, Defreyn G, Machin SJ, et al. Arterial thrombosis, intrauterine death and "lupus" anticoagulant: detection of immunoglobulin interfering with prostacyclin formation. Lancet 1981;i:244-6.
16. Smolarsky MA. A simple radioimmunoassay to determine binding of antibodies to lipid antigens. J Immunol Methods 1980;38:85-93.
17. Harris EN, Gharavi AE, Boey ML, et al. Anticardiolipin antibodies: detection by radioimmunoassay and association with thrombosis in systemic lupus erythematosus. Lancet 1983;2:1211-4.
18. Loizou S, McCrea JD, Rudge A, Reynolds A, Boyle CC, Harris EN. Measurement of anticardiolipin antibodies by an enzyme-linked immunosorbent assay (ELISA): standardization and quantitation of results. Clin Exp Immunol 1985;62:738-45. [MEDLINE]
19. Hughes GRV. The anticardiolipin syndrome. Clin Exp Rheumatol 1985;3:285-6.
20. Delezé M, Oria CV, Alarcón-Segovia D. Occurrence of both hemolytic anemia and thrombocytopenic purpura (Evans' syndrome) in systemic lupus erythematosus. Relationship to antiphospholipid antibodies. J Rheumatol 1988;15:611-5.
21. Alarcón-Segovia D, Delezé M, Oria CV, et al. Antiphospholipid antibodies and the antiphospholipid syndrome in systemic lupus erythematosus. A prospective analysis of 500 consecutive patients. Medicine (Baltimore) 1989;68:353-65.
22. Alarcón-Segovia D, Pérez-Vázquez ME, Villa AR, Drenkard C, Cabiedes J. Preliminary classification criteria for the antiphospholipid syndrome within systemic lupus erythematosus. Semin Arthritis Rheum 1992;21:275-85.
23. Wilson WA, Gharavi AE, Koike T, et al. International consensus statement on preliminary classification criteria for definite antiphospholipid syndrome: Report of an international workshop. Arthritis Rheum 1999;42:1309-11.
24. Alarcón-Segovia D, Sánchez-Guerrero J. Primary antiphospholipid syndrome. J Rheumatol 1989;16:482-8.
25. Asherson RA. A "primary" antiphospholipid syndrome? J Rheumatol 1988;15:1742-6.
26. Mackworth-Young CG, Loizou S, David J, Walport MJ. Primary antiphospholipid syndrome: features of patients with raised anticardiolipin antibodies and no other disorder. Ann Rheum Dis 1989;48:362-7.
27. Asherson RA, Khamashta MA, Ordi-Ros J, et al. The "primary" antiphospholipid syndrome: major clinical and serological features. Medicine (Baltimore) 1989;68:366-74.
28. Galli M, Comfurius P, Maassen C, et al. Anticardiolipin antibodies (ACA) directed not to cardiolipin but to a plasma protein cofactor. Lancet 1990;335:1544-7.
29. McNeil HD, Simpson RJ, Chesterman CN, Krilis SA. Antiphospholipid antibodies are directed against a complex antigen that includes a lipid-binding inhibitor of coagulation: beta-2- glycoprotein I (apolipoprotein H). Proc Natl Acad Sci USA 1990;87:4120-4.
30. Matsuura E, Igarashi Y, Fujimoto M, Ichikawa K, Koike T. Anticardiolipin cofactor(s) and differential diagnosis of autoimmune disease. Lancet 1990;336:177-8.
31. Shoenfeld Y, Meroni PL. The beta-2-glycoprotein I and antiphospholipid antibodies. Clin Exp Rheumatol 1992;10:205-9.
32. Viard JP, Amoura Z, Bach JF. Association of anti-beta2- glycoprotein I antibodies with lupus-type circulating anticoagulant and thrombosis in systemic lupus erythematosus. Am J Med 1992;93:181-6.
33. Gómez-Pacheco L, Villa AR, Drenkard C, Cabiedes J, Cabral AR, Alarcón-Segovia D. Serum anti-beta 2-glycoprotein-I and anticardiolipin antibodies during thrombosis in systemic lupus erythematosus patients. Am J Med 1999;106:417-23.
34. Matsuura E, Igarashi Y, Yasuda T, Triplett DA, Koike T. Anticardiolipin antibodies recognize beta 2-glycoprotein I structure altered by interacting with an oxygen modified solid phase surface. J Exp Med 1994;179:457-62.
35. Roubey RAS, Eisenberg R, Harper MF, Winfield JB. "Anticardiolipin" autoantibodies recognize beta 2-glycoprotein I in the absence of phospholipid. Importance of Ag density and bivalent binding. J Immunol 1995;154:954-60.
36. Cabiedes J, Cabral AR, Alarcón-Segovia D. Clinical manifestations of the antiphospholipid syndrome in systemic lupus erythematosus patients associate more strongly with anti-beta 2-glycoprotein-I than with antiphospholipid antibodies. J Rheumatol 1995; 22:1899-906.
37. Alarcon-Segovia D, Cabral AR. Antiphospholipid/cofactor syndromes. J Rheumatol 1996;23:1319-22.
38. Alarcon-Segovia D. Pathogenetic potential of antiphospholipid antibodies. J Rheumatol 1988;15:890-3.
39. Ruiz-Arguelles GJ, Ruíz-Argüelles A, Alarcón-Segovia D, et al. Natural anticoagulants in systemic lupus erythematosus. Deficiency of protein S bound to C4bp with recent history of venous thromboses, antiphospholipid antibodies, and the antiphospholipid syndrome. J Rheumatol 1991;18:552-8.
40. Vazquez-Mellado J, Llorente L, Alarcón-Segovia D. Exposure of anionic phospholipid upon platelet activation permits binding of beta 2-glycoprotein-I and through it that of IgG antiphospholipid antibodies. Studies in platelets from patients with antiphospholipid syndrome and normal subjects. J Autoimmun 1994;7:335-48.
41. Cabral AR, Cabiedes J, Alarcón-Segovia D. Hemolytic anemia related to an IgM autoantibody to phosphatidylcholine that binds in vitro to stored and to bromelain-treated human erythrocytes. J Autoimmun 1990;3:773-87.
42. Del Papa N, Meroni PL, Tincani A, et al. Relationship between anti-phospholipid and anti-endothelial cell antibodies: further characterization of the reactivity on resting and cytokine-activated endothelial cells. Clin Exp Rheumatol 1992;10:37-42.
43. Vaarala O, Alfthan G, Jauhiainen M, Leirisalo-Repo M, Aho K, Palosuo T. Crossreaction between antibodies to oxidised low-density lipoprotein and to cardiolipin in systemic lupus erythematosus. Lancet 1993;341:923-5.
44. Blank M, Cohen J, Toder V, Shoenfeld Y. Induction of antiphospholipid syndrome by passive transfer of anti-cardiolipin antibodies. Proc Nat Acad Sci USA 1991;88:3069-73.
45. Blank M, Faden D, Tincani A, et al. Immunization with anticardiolipin cofactor (beta 2 GP-I) induces experimental antiphospholipid syndrome in naive mice. J Autoimmun 1994;7:441-55.
46. Blank M, Shoenfeld Y, Cabilly S, Heldman Y, Fridkin M, Katchalski-Katzir E. Prevention of experimental antiphospholipid syndrome and endothelial cell activation by synthetic peptides. Proc Nat Acad Sci USA 1999;96:5164-8.
47. Blank M, Krause I, Fridkin M, et al. Bacterial induction of autoantibodies to beta 2-glycoprotein-I accounts for the infectious etiology of antiphospholipid syndrome. J Clin Invest 2002; 109:797-804.
48. Yoshida K, Arai T, Kaburaki J, Ikeda Y, Kawakami Y, Kuwana M. Restricted T-cell receptor beta-chain usage by T cells autoreactive to beta 2-glycoprotein I in patients with antiphospholipid syndrome. Blood 2002;99:2499-504.
49. Guerin J, Sheng Y, Reddel S, Iverson GM, Chapman MG, Krilis S. Heparin inhibits the binding of beta 2-glycoprotein I to phospholipids and promotes the plasmin-mediated inactivation of this blood protein. J Biol Chem 2002;277:1-6.

March is Deep Vein Thrombosis (DVT) Awareness Month

2009-03-19T19:16:00.002-05:00

March is Deep Vein Thrombosis (DVT) Awareness Month

Click on this banner to watch the video:

or you can watch this here: http://www.youtube.com/watch?v=RUYI6Xju4RA

For DVT related awareness gear go to http://www.cafepress.com/apsfoundation.

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS

Volume 12 of the APSFA Newsletter - "Antiphospho...What?" is NOW Available!

2009-03-02T08:25:00.000-06:00

Volume 12 of the APSFA Newsletter - "Antiphospho...What?" is NOW Available!

Hello!!

The WINTER/SPRING 2009 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol12WinSpr2009.pdf

The next volume will be coming out in late Spring, early Summer, 2009.

Please let us know if there are any topics that you'd like our Medical Advisors to cover in their articles. We try to request topics that people are emailing about or that are discussed on our the forum. So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisors.

We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.

Thank you to those people who have submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.

We could also use articles written by medical professionals or medical students. Please contact us if you are interested.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Thank you for your continued support!

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter

Volume 11 of the APSFA Newsletter - "Antiphospho...What?" is NOW Available!

2008-12-03T10:01:00.001-06:00

The FALL/WINTER 2008 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol11FallWin2008.pdf

The next volume will be coming out in late winter/early spring, 2009.

Please let us know if there are any topics that you'd like our Medical Advisors to cover in their articles. We try to request topics that people are emailing about or that are discussed on our the forum. So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisors.

We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.

A patient story is as easy as writing your intro!

Thank you to those people who have submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.

We could also use articles written by medical professionals or medical students. Please contact us if you are interested.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Thank you for your continued support!

Keyword: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter

2008 APSFA Giving Tree

2008-11-23T12:10:00.003-06:00

Welcome to our 3rd annual Holiday Giving Tree. This tree holds a special meaning for the members of the APS Foundation of America, Inc and the community it serves. In the past two years over $3000 were donated to the APS Foundation of America, Inc. during the holiday season.

Each ornament and present signifies a donation made to the APSFA in the name of an individual or group honored at this special time of the year. This donation will enable us to keep our unique non-profit organization operating and help promote awareness of APS.

All donations made by 12/31/08 towards the Giving Tree are tax deductible.

To make a donation and add an ornament to our tree click here: http://www.apsfa.org/givingtree.htm

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, holiday, fundraiser

Exclusive 2008 APSFA Holiday Ornament

2008-11-23T12:03:00.000-06:00

This is an EXCLUSIVE holiday ornament for 2008. This design will not be available after December 31, 2008 so get it while you can! Each ornament bought will donate $2.00 to the APSFA.

$7.99

http://www.cafepress.com/apsfoundation/1952386

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, holiday, fundraiser

Antiphospholipid Antibody Syndrome (APS) Focus Interview

2008-10-12T14:45:00.001-05:00

You read about it in the newsletter and we did get in on the net in full!! Enjoy!!

Volume 10 of the APSFA Newsletter - "Antiphospho...What?" is NOW Available!

2008-09-29T19:11:00.000-05:00

Volume 10 of the APSFA Newsletter - "Antiphospho...What?" is NOW Available!

Hello!!

The SUMMER/FALL 2008 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol10SumFall2008.pdf

The next volume will be coming out in November/December, 2008.

Please let us know if there are any topics that you'd like our Medical Advisors to cover in their articles. We try to request topics that people are emailing about or that are discussed on our support forum. (http://www.apsforum.com) So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisors.

We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org. If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.

Thank you to those people who have submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Thank you for your continued support!

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter

June is Antiphospholipid Antibody Syndrome (APS) Awareness month

2008-06-06T14:32:00.001-05:00

Antiphospholipid Antibody Syndrome (APS) is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.

The APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is http://www.apsfa.org

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, PSA

Volume 9 of the APSFA Newsletter - "Antiphospho...What?" is NOW Available!

2008-06-04T09:05:00.001-05:00

Hello!!

The SPRING/SUMMER 2008 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol9SprSum2008.pdf

The next volume will be coming out in August/September, 2008.

Please let us know if there are any topics that you'd like our Medical Advisors to cover in their articles. We try to request topics that people are emailing about or that are discussed on our support forum. (http://www.apsforum.com) So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisors.

We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters. Thank you to those people who have submitted articles.

If you have submitted an article and we have not used it yet, we will be using it in the near future.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Thank you for your continued support!

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

2008-06-01T11:02:00.002-05:00

FOR IMMEDIATE RELEASE

Date: 06/02/2008
Contact: Christina "Tina" Pohlman

Phone: 608-782-2626

Website Address: www.apsfa.org

Email Address: apsfa@apsfa.org

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

The APS Foundation of America, Inc. (APSFA) has declared June as National Antiphospholipid Antibody (APS) Awareness Month. We are educating the public and medical community about this disorder, urging people to Get in the Flow!

This disorder threatens to become more common than Lupus and Multiple Sclerosis.

The APSFA is sending petitions to several states to make June APS Awareness Month. The APSFA will be attending conferences, medical seminars, grand rounds and health fairs to share the patient perspective and provide awareness of APS throughout the month of June and also encouraging the community to Get in the Flow.

Individual and APSFA fundraisers will be occurring throughout the country to help promote APS awareness and help support the mission.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

The APSFA is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization.

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626

Website Address: www.apsfa.org. Email Address: apsfa@apsfa.org

###

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS

APS Awareness PSA

2008-05-02T08:53:00.001-05:00

URL: http://www.youtube.com/watch?v=_Ib_0Gk94XI

APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.

The APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is http://www.apsfa.org

Volume 8 of Our Newsletter, "Antiphospho...What?" is available for download!

2008-03-23T13:14:00.000-05:00

Volume 8 of Our Newsletter, "Antiphospho...What?" is available for download!

The newest installment of our quarterly newsletter, "Antiphospho...What??" is available for download at this link: http://www.apsfa.org/docs/APSFAVol8WinSpr2008.pdf

The next volume will be coming out in May, 2008.

Thank you to those people who submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.

We are in need of patient stories (esp about Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. Please submit articles to the following email address: articles@apsfa.org.

If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email add or email us using the email address below. We are open to any suggestions.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Thank you for your continued support.

Deep-Vein Thrombosis (DVT) Awareness Program

2008-03-01T17:40:00.001-06:00

Deep-Vein Thrombosis (DVT) Awareness Program
Featuring: Melanie Bloom, National Patient Spokesperson, Coalition to Prevent DVT

Date & Time: March 11, 2008, 2:00-3:00PM

Location: University of Utah School of Medicine, Salt Lake City, UT

Sponsored by: University of Utah Thrombosis Service & University of Utah 5 Med Nursing Staff

If you have any questions, please call 801-581-7818.

Click here to download a flier with more information about this DVT Awareness Month event.

http://www.clotcare.com/clotcare/dvt_awareness_month_march_2008.aspx#dvtawarenessunivutah

Blood Clots and Blood Clotting Disorders: Key Issues in Diagnosis, Treatment and Prevention

2008-02-24T11:57:00.000-06:00

Blood Clots and Blood Clotting Disorders:
Key Issues in Diagnosis, Treatment and Prevention
Saturday, March 1, 2008

Education and Discussion Seminar on Blood Clots
Patients, Family Members, Public and Health Care Providers are welcome

This seminar is FREE but registration before February 22nd is requested.

Hosted by

The University of North Carolina Thrombosis Program in conjunction with the National Alliance for Thrombosis and Thrombophilia and Duke University Thrombosis & Hemostasis Center

Location

Hilton Hotel
Raleigh-Durham Airport at Research Triangle Park
4810 Page Creek Lane, Durham, NC
(919) 941-6000

Agenda

Click here to download the complete program.

Registration Information

This seminar is FREE but registration before February 22nd is requested as space is limited. Registration includes breakfast, lunch and materials.

To register, please log on to http://unchealthcare.org/bloodclotseminar. For questions, call Cheryl Jeanneret at 919-843-2568 or e-mail: cheryl_jeanneret@med.unc.edu.

GoodSearch.com Charity of the Day 2/28/08!

2008-02-18T13:58:00.001-06:00

The APS Foundation of America, Inc will be featured as the Charity of the Day on GoodSearch.com on February 28, 2008!!

Please remember to use GoodSearch.com, the Yahoo-powered search engine, for all of your web searches as we receive a penny every time you do a search!!

And, please do all of your online shopping through GoodShop.com, the online shopping mall which donates a percentage of each purchase to us! Hundreds of great stores including Target, Gap, Best Buy, Barnes & Noble, Macy’s and ebay have teamed up with GoodShop and every time you place an order, you’ll be supporting us!

You can use GoodSearch and GoodShop every day, but be sure to check us out on the GoodSearch homepage on February 28, 2008!!

New APSFA Cafe Press Coupon!

2008-02-17T10:31:00.000-06:00

Here is a Cafe Press Coupon to help with your order:

Save $5
when you spend $50 or more!
-----------------------------Enter the coupon codeCLOUTBUMPER
when checking out.-----------------------------
Coupon expires 2/23/08... so hurry!

This is really a good coupon. Perfect time to purchase the log book, a t-shirt and tote bag. Check out our NEW designs!
Support APS & Lupus Awareness & the APSFA!

100% of the profits from these products will go to the APS Foundation of America, Inc.

To visit our Cafe Press Store click here: http://www.cafepress.com/apsfoundation

Brought to you by the APS Foundation of America

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS

Giving Tree 2007 - Thank You!

2008-01-07T13:50:00.000-06:00

Thank you to everyone who donated to decorate our tree! Because of your generous donations, we were able to raise $1095 with this year's Giving Tree!

This tree holds a special meaning for the members of the APS Foundation of America, Inc and the community it serves. And since the Giving Tree was such a big success, we will be making this an annual tradition.

CLICK HERE to see our 2007 Giving Tree

What is New On MissionFish This Week?

2008-01-03T14:19:00.001-06:00

There are items on MissionFish right now some of you may be interested in purchasing. Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582

Original 16x20 Oil PAINTing Winter Landscape snow tree
slim80craft2
Starting Bid: $18.99
15% donated to the APSFA
3d 7h 51m time left to bid as of this post

Original 8x10 Acrylic Painting Landscape COA blue green
slim80craft2
Starting Bid: $9.99
10% donated to the APSFA
3d 8h 23m time left to bid as of this post

Original Small Acrylic Painting Chickadee Bird coa
slim80craft2
Starting Bid: $8.99
10% donated to the APSFA
3d 8h 48m time left to bid as of this post

Original Small Acrylic Painting winter snow landscape
slim80craft2
Starting Bid: $8.99
10% donated to the APSFA
3d 8h 55m time left to bid as of this post

APS FOUNDATION OF AMERICA, INC. JOINS WITH NORD TO CELEBRATE THE 25th ANNIVERSARY OF THE ORPHAN DRUG ACT

2007-12-19T14:50:00.001-06:00

FOR IMMEDIATE RELEASE

Date: 12/19/2007

Contact: Christina "Tina" Pohlman

Phone: 608-782-2626

Website Address: www.apsfa.org

Email Address: apsfa@apsfa.org

APS FOUNDATION OF AMERICA, INC. JOINS WITH NORD TO CELEBRATE THE

25^th ANNIVERSARY OF THE ORPHAN DRUG ACT

La Crosse, WI, January 3, 2008----On January 4, 1983, President Ronald Reagan signed groundbreaking legislation that brought real hope for more than 25 million Americans living with one of the 7,000 rare disorders recognized today. The Orphan Drug Act of 1983 (ODA) spurred breakthrough drug research and development for little-known diseases, while providing a potent catalyst to the growth of the pharmaceutical and biotechnology industries in the U.S.

An “orphan” disease is defined by the U.S. Food and Drug Administration (FDA) as a disease or condition that affects fewer than 200,000 Americans. In the past, because of very low prevalence, orphan diseases were overlooked by drug and medical device developers. In the 10 years prior to passage of the ODA, only 10 new drugs for rare diseases were developed by the pharmaceutical industry. In the 25 years since the approval of the ODA, more than 300 new orphan drugs have been approved in the U.S.—an average of about 11 new drugs every year.

The APS Foundation of America, Inc. is just one organization that acts on behalf of patients and their healthcare professionals to promote improvements in diagnosis and treatment for a rare disease—Antiphospholipid Antibody Syndrome (APS). APS affects new patients every year. Women are more likely than men to be affected by APS. Some estimates say that 75% to 90% of those affected are women. For example, it has been estimated by some doctors that one third of all of young strokes (defined as under the age of 50) are due to APS.

In obstetrics it is estimated by some doctors that up to 25% of all women with 2 or more spontaneous miscarriages have APS. Some doctors believe that 1 in 5 of all Deep Vein Thrombosis (DVTs), Pulmonary Embolisms (PEs), and even worse, amputations are due to APS. And it is believed that 40-50% of patients with Lupus also have APS. Still, with these statistics, APS rarely is discussed as a women’s health issue and is misdiagnosed often. Therefore the total number of people affected and true statistics are unknown really.

APS is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them. There are two known forms of APS. APS may occur in people with systemic lupus erythematosus, other autoimmune disease, or in otherwise healthy individuals. Sadly, when most people hear about APS and it being referred to as autoimmune disease, they incorrectly confuse the terms autoimmune with acquired immune deficiency syndrome (AIDS); or they think this is a form of cancer.

This lack of knowledge and awareness results in needless suffering for persons with APS. Misdiagnosis and / or delayed diagnosis usually result in damage to vital organs. The need to bring a national attention to APS as a common factor in multiple miscarriages, thrombosis, young strokes and heart attacks is vital in order to bring a joint effort to research, funding, early detection, and eventually, prevention and cure for APS.

There is no cure for APS, but there is treatment. The treatment of choice for patients with APS who have had a blood clot is anticoagulant therapy. Please note there is no FDA approved treatment to control these antibodies that we for that cause these problems. This is usually successful in preventing further clots. For women with APS and recurrent miscarriages who have not had a prior blood clot, the use of anticoagulant therapy during the pregnancy significantly increases the likelihood of a successful outcome. Some individuals may have elevated antiphospholipid antibodies but have no clinical manifestations of the syndrome. These individuals are usually treated with aspirin. Aspirin reduces the risk of blood clots by making the platelets less sticky. Studies are ongoing to determine how helpful aspirin is and whether low doses of anticoagulants might be more effective.

In general patients who have had a blood clot (i.e., stroke, heart attack, DVT) and have persistently positive tests for antiphospholipid antibodies should be treated with anticoagulants indefinitely. Discontinuing treatment after a fixed period of time, such as six months, may be quite dangerous in such patients. In some patients with a history of blood clots, antiphospholipid antibodies may disappear after a certain period of time. It is not known whether it is safe to stop anticoagulation in this situation. Consultation with a doctor experienced in treating APS is recommended for such patients.

On the 25^th anniversary of the signing of the Orphan Drug Act, we join with the National Organization for Rare Disorders (NORD) and its members in continuing our commitment to, and support for, patients around the world with rare diseases. We also celebrate the success of this legislation in bringing improvements in healthcare to millions of Americans. Through drugs as diverse as Thalomid® (thalidomide), Myozyme® (alglucosidase alfa), Nutropin® (somatropin {rDNA origin} for injection), and Gleevec® (imatinib), the ODA has offered new opportunities for patients that might never otherwise have existed.

NORD was founded in 1983 to help people with rare “orphan” diseases and to assist the organizations that serve them. The founders of NORD were a driving force behind the passage of the ODA. This is an appropriate time to congratulate them on their vision and recognize them for their persistence and their success.

We also recognize that the achievements of companies like Genentech, Amgen, Genzyme, Allergan, Cephalon, Celgene and others have been profoundly influenced by the existence of the ODA, which has brought jobs for thousands in the biotech and pharmaceutical industries, financial rewards for many of the early investors in such companies, and diverted the focus of scientific inquiry to chronic and life-threatening diseases that were previously untreated, leaving patients hopeless, until the ODA was enacted.

With the current advances in such areas as genomics, proteomics, targeted therapeutics, personalized medicine, and stem cell biology, we can expect to see a vast array of new breakthrough products developed for rare disorders in the next 25 years—and we need to make sure that such products will be available and accessible for the patients with these disorders who so badly need them.

----------

Media contacts:

Christina "Tina" Pohlman President, 608-782-2626, www.apsfa.org, apsfa@apsfa.org

Mary Dunkle, National Organization for Rare Disorders, (203) 744-0100, mdunkle@rarediseases.org

Peggy Heller, Vox Medica, Inc., (908) 918 0092, pheller@voxmedica.com

New On MissionFish This Week!

2007-12-11T10:22:00.000-06:00

There are items on MissionFish right now some of you may be interested in purchasing.

Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582

8x10 AcrYLic PAINTing whimsical SnowMan Christmas tree
slim80craft2
Starting Bid: $12.99
15% donated to the APSFA
16h 29m time left to bid as of this post

8x10 Oil Painting Country Cow Chicken Farm Xmas
slim80craft2
Starting BidL $12.99
10% donated to the APSFA
2d 15h 21m time left to bid as of this post

12x16 AcrYLic PAINTing of a single yellow rose
slim80craft2
Starting Bid: $15.99
15% donated to the APSFA
4d 4h 44m time left to bid as of this post

12x16 OIL PAINTing of a colorful Winter Landscape
slim80craft2
Starting BidL $15.99
15% donated to the APSFA
4d 15h 56m time left to bid as of this post

8x10 Acrylic Painting Landscape Water Bridge Xmas
slim80craft2
Starting Bid: $12.99
10% donated to the APSFA
6d 16h 47m time left to bid as of this post

Last Minute Shopping? Need Ideas?

2007-12-10T19:11:00.000-06:00

Here is a Cafe Press Coupon to help with your order:

Save $10 when you spend $50 or more! ----------------------------- Enter the coupon code HOLIDAY2007 when checking out. ----------------------------- Coupon expires 12/15/07... so hurry! This is really a good coupon. Perfect time to purchase the log book, a t-shirt and tote bag. Support APS Awareness & the APSFA! It is also time to start think of holiday shopping! 100% of the profits from these products will go to the APS Foundation of America, Inc. To visit our Cafe Press Store click here: http://www.cafepress.com/apsfoundation Brought to you by the APS Foundation of America

2007 APSFA Giving Tree!

2007-12-09T11:04:00.000-06:00

2007 APSFA Giving Tree!

Last year's Giving Tree was such a success that we've brought it back just in time for the holidays! The holiday Giving Tree at the APS Foundation of America, Inc holds a special meaning for the members of the APSFA and the community it serves.

Each ornament and present signifies a donation made to the APSFA in the name of an individual or group honored at this special time of the year. You can pick out your special ornament below and for a donation we will put your ornament on our Giving Tree. We hope that by the new year, our Giving Tree will be fully decorated!

Your donation will enable the APSFA to keep our unique non-profit organization operating and help promote awareness of Antiphospholipid Antibody Syndrome and as always, your donation is tax deductible.

Any donations made in memory or in honor of a loved one will have a special ornament and package so they stand out from the rest. All donor names will be listed under the tree as the ornament donations come in.

To make a donation and add an ornament to our tree click here: http://www.apsfa.org/givingtree.htm

Exclusive 2007 APSFA Holiday Ornament

2007-12-08T12:39:00.000-06:00

*Exclusive* 2007 APSFA Holiday Ornament

It's that time of year!! Our Exclusive 2007 APSFA snowflake ornament is available for purchase. The ornaments are made of porcelain and feature our one of a kind snowflake design. These are dated and are only going to be available until Dec 31, 2007 so purchase yours while you can!

The ornaments are $7.99 each with $2.00 of that going right back to the APSFA.
Click HERE to purchase our Exclusive 2007 Holiday Snowflake Ornament: http://www.cafepress.com/apsfoundation

Brought to you by the APS Foundation of America

Here is a Cafe Press Coupon to help with your order:

Save $10when you spend $50 or more!
-----------------------------
Enter the coupon code
HOLIDAY2007
when checking out.
-----------------------------
Coupon expires 12/15/07... so hurry!

This Weekend on MissionFish

2007-12-07T11:54:00.001-06:00

There are items on MissionFish right now some of you may be interested in purchasing. Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582

8x10 AcrYLic PAINTing of 3 Pears by Savage

slim80craft2

Starting Bid: $12.99
15% donated to the APSFA
2d 12h 37m left to bid as of this post

8x10 AcrYLic PAINTing whimsical SnowMan Christmas tree

slim80craft2

Starting Bid: $12.99
15% donated to the APSFA
4d 14h 21m left to bid as of this post

8x10 Oil Painting Country Cow Chicken Farm Xmas

slim80craft2

Starting Bid: $12.99
10% donated to the APSFA
6d 13h left to bid as of this post

This was just added to MissionFish.

2007-12-04T13:03:00.000-06:00

This was just added to MissionFish.

There are items on MissionFish right now some of you may be interested in purchasing. Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582

8x10 AcrYLic PAINTing of 3 Pears by Savage

slim80craft2

Starting Bid: $12.99

15% donated to the APSFA

5d 10h 56m left to bid as of this post.

What is New On MissionFish This Week?

2007-11-30T08:49:00.000-06:00

Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582

AcrYLic PAINTing by Savage STuffed ANImal FRiends Xmas
slim80craft2
Starting Bid: $17.99
15% donation to the APSFA
6d 15h 35m left to bid as of this post

AcRyLIc PAINTing BluE PinK LavendeR Landscape Xmas
slim80craft2
Starting bid: $17.99
10% donation to the APSFA
6d 15h 53m left to bid as of this post

AcRyLiC PaINTinG Savage ReD GOld SuNSet Landscape Xmas
slim80craft2
Starting Bid: $17.99
10% donation to the APSFA
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Acrylic Painting Landscape Water Bridge trees - Xmas
slim80craft2
Starting Bid: $17.99
10% donation to the APSFA
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Nativity Hallmark Keepsake Ornament 1996 xmas MIB
slim80craft2
Starting Bid: $5.99
15% donation to the APSFA
6d 16h 40m left to bid as of this post

Volume 7 of Our Newsletter, "Antiphospho...What?"

2007-11-25T14:03:00.000-06:00

Volume 7 of Our Newsletter, "Antiphospho...What?" is available for download!

The newest installment of our quarterly newsletter, "Antiphospho...What??" is available for download at this link: http://www.apsfa.org/docs/APSFAVol7Fall2007.pdf

The next volume will be coming out in February, 2008. Thank you to those people who submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future. We are in need of patient stories (esp about Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. Please submit articles to the following email address: articles@apsfa.org. If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email add or email us using the email address below. We are open to any suggestions.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm Thank you for your continued support.

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS

2007 APSFA Giving Tree!

2007-11-25T12:34:00.000-06:00

Last year's Giving Tree was such a success that we've brought it back just in time for the holidays! The holiday Giving Tree at the APS Foundation of America, Inc holds a special meaning for the members of the APSFA and the community it serves.

Each ornament and present signifies a donation made to the APSFA in the name of an individual or group honored at this special time of the year. You can pick out your special ornament below and for a donation we will put your ornament on our Giving Tree. We hope that by the new year, our Giving Tree will be fully decorated!

Your donation will enable the APSFA to keep our unique non-profit organization operating and help promote awareness of Antiphospholipid Antibody Syndrome and as always, your donation is tax deductible.

Any donations made in memory or in honor of a loved one will have a special ornament and package so they stand out from the rest. All donor names will be listed under the tree as the ornament donations come in.

To make a donation and add an ornament to our tree click here: http://www.apsfa.org/givingtree.htm

What's New On MissionFish This Week?

2007-11-25T12:07:00.001-06:00

There are items on MissionFish right now some of you may be interested in purchasing. Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582

Nativity Hallmark Keepsake Ornament 1996 xmas MIB
slim80craft2
Starting Bid $9.99
15% donated to the APSFA
2d 3h 38m left to bid

Original Acrylic Painting gift Savage Red Gold Sunset
slim80craft2
Starting Bid $24.99
10% donated to the APSFA
3d 7h 57m left to bid

Original Acrylic Painting gift Savage blue pink violet
slim80craft2
Starting Bid $24.99
10% donated to the APSFA
3d 11h 52m left to bid

Original Oil Painting gift Savage cow chicken green
slim80craft2
Starting Bid: $24.99
10% donated to the APSFA
3d 12h 9m left to bid

Original Acrylic Painting gift Savage stuffed animals
slim80craft2
Starting Bid $24.99
15% donated to the APSFA
3d 12h 38m left to bid

Exclusive 2007 APSFA Holiday Ornament

2007-11-20T09:53:00.002-06:00

*Exclusive* 2007 APSFA Holiday Ornament

It's that time of year!! Our Exclusive 2007 APSFA snowflake ornament is available for purchase. The ornaments are made of porcelain and feature our one of a kind snowflake design. These are dated and are only going to be available until Dec 31, 2007 so purchase yours while you can!

The ornaments are $7.99 each with $2.00 of that going right back to the APSFA.

Click HERE to purchase our Exclusive 2007 Holiday Snowflake Ornament: http://www.cafepress.com/apsfoundation

Brought to you by the APS Foundation of America

Friends & Family of APS Foundation of America, Inc. E-Store

2007-11-20T09:53:00.001-06:00

Friends & Family of APS Foundation of America, Inc. E-Store
Get $15 off $50*

Use coupon code: FRFAM2007
Offer Valid November 20-27, 2007

Start shopping at APS Foundation of America, Inc. E-Store: http://www.cafepress.com/apsfoundation

* Excludes Gift Certificates, bulk orders, taxes and shipping fees. Cannot be combined with any other offers, discounts or coupons. Valid through November 27, 2007 at 11:59 p.m. (PST).

CellCept: Black Box Warning Re Pregnancy

2007-10-30T13:42:00.000-05:00

CellCept: New Black Box Warning Regarding Pregnancy

CellCept (mycophenolate mofetil)

Audience: Cardiac, renal, hepatic transplantation specialists, gynecologists, obstetricians, and other healthcare professionals

[Posted 10/29/2007] Roche and FDA notified healthcare providers that use of CellCept (mycophenolate mofetil) is associated with increased risk of first trimester pregnancy loss and increased risk of congenital malformations, especially external ear and facial abnormalities including cleft lip and palate, and anomalies of the distal limbs, heart, esophagus, and kidney. Based on postmarketing data from the United States National Transplantation Pregnancy Registry and additional postmarketing data collected in women exposed to systemic mycophenolate mofetil during pregnancy, the pregnancy category for CellCept has been changed from Category C (risk of fetal harm cannot be ruled out) to Category D (positive evidence of fetal risk). Labeling changes include the following sections: BOXED WARNING, WARNINGS/Pregnancy and Pregnancy Exposure Prevention, PRECAUTIONS/Information for Patients, and ADVERSE REACTIONS/Postmarketing Experience.

Within one week of beginning CellCept therapy, women of childbearing potential should have a negative serum or urine pregnancy test. In addition, women of childbearing potential (including pubertal girls and peri-menopausal woman) taking CellCept must receive contraceptive counseling and use effective contraception. Healthcare professionals and patients should be aware that CellCept reduces blood levels of the hormones in the oral contraceptive pill and could theoretically reduce its effectiveness. See the Dear Healthcare Professional Letter for additional recommendations for women of childbearing potential.

http://www.rocheusa.com/products/cellcept/pregnancy_notice.pdf

http://www.fda.gov/medwatch/safety/2007/safety07.htm

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, cellcept, pregnancy, warning

Blood Clots and Blood Clotting Disorders: Key Issues in Diagnosis, Treatment and Prevention

2007-10-13T20:02:00.000-05:00

Blood Clots and Blood Clotting Disorders:
Key Issues in Diagnosis, Treatment and Prevention
Saturday, November 10, 2007

This FREE seminar will be of interest to:

People who have had a blood clot or are at risk
People with inherited clotting abnormalities
Family members
Health care workers
Anyone wanting to know more about blood clots and wishing to advance prevention, diagnosis and treatment of thrombosis and thrombophilia

Hosted by

The National Alliance for Thrombosis and Thrombophilia in conjunction with the University of Utah and Intermountain Healthcare

Location

University of Utah's Health Sciences Education Building (HSEB) in Alumni Hall room 2110, Salt Lake City, UT

A map of the conference facilities can be found at http://www.conferences.utah.edu/images/pdf/UGHMap.pdf.

Agenda

Click here to download the complete program.

Registration Information

Registration before November 2nd is requested. You may register by sending an e-mail to: nattseminars@yahoo.com or you may RSVP by phone. Please call Kandace Kaylor at 801-408-1682 before November 4th and 801-507-3747 after November 4th. To register.

http://www.nattinfo.org/commandevents.htm#saltlake

Volume 6 of out Newsletter, "Antiphospho...What?" is available for download!

2007-09-01T21:53:00.000-05:00

The newest installment of our quarterly newsletter, "Antiphospho...What??" is available for download at this link: http://www.apsfa.org/docs/APSFAVol6Summer2007.pdf

The next volume will be coming out in November, 2007.

Thank you to those people who submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.

We are in need of patient stories (esp about Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. Please submit articles to the following email address: articles@apsfa.org. If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email add or email us using the email address below.

We are open to any suggestions.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Thank you for your continued support.

Notice Regarding Mailing List

2007-09-01T20:46:00.001-05:00

Greetings from the APS Foundation of America, Inc.

Our server has recently made some changes and we now have to offer an opt in option for mass emails. Because of the server change, joining our mailing list by clicking here: http://www.apsfa.org/index.html#list and filling out the form will now be the *ONLY* way you will be able to receive our quarterly newsletter, "Antiphospho...What?" and APSFA announcements in your email inbox.

Please note: You will need to click the confirmation email to verify this subscription so please watch your spam buckets and remember to at @apsfa.org to your safe list.

Thank you for your cooperation and we are sorry about the inconvenience.

APS Foundation of America, Inc. Staff
http://www.apsfa.org
Email us at: APSFA

Got Gear?

2007-08-27T20:27:00.000-05:00

Save $5
when you spend $50 or more!
-----------------------------
Enter the coupon code

SEARCHSHELL

when checking out.
-----------------------------
Coupon expires 9/3/07... so hurry!

This is really a good coupon. Perfect time to purchase the log book, a t-shirt and tote bag.

Support APS Awareness & the APSFA!

100% of the profits from these products will go to the APS Foundation of America, Inc.

To visit our Cafe Press Store click here: http://www.cafepress.com/apsfoundation

Brought to you by the APS Foundation of America

Sisters' ailment identified

2007-07-23T11:05:00.000-05:00

07/23/2007
Sisters' ailment identified
By Christy Murdoch , For the Herald-Standard

Sisters Darla Pardo and Robin L. Gibson display a variety of medications. After suffering symptoms for years, the two have been diagnosed with the blood-clotting disorder Antiphospholipid Antibody Syndrome.

After years of suffering from mysterious health problems, Robin L. Gibson and her sister, Darla Pardo, both of Fairchance, were finally diagnosed with Antiphospholipid Antibody Syndrome (APS), a serious blood-clotting disorder that can have devastating consequences.

Because of their struggle with the disease and their difficulty receiving a diagnosis, the sisters agreed to tell their story to educate the public and the medical community about APS. Their goal is simply to prevent others from suffering the way they have.

Gibson explained that APS is a blood-clotting disorder that causes the blood to be thicker than normal.

The main feature of the disorder is the development of blood clots that can occur at any time and can be fatal. She said it has been referred to as "sticky blood" syndrome.

"My sister and I have suffered for years with the disorder, but the doctors couldn't find a reason," Gibson said. "Some suggested that our problems were because of lifestyle. Others thought we suffered from anxiety and depression and prescribed antidepressants."

Gibson's clots are in the arteries, and Pardo's are in the veins.

"My doctor says I am a ticking time-bomb," Gibson said.

When the clots are in the arteries, Gibson said the consequences can be more immediate because the arteries carry blood to the major organs, such as the heart, lungs and brain. However, either condition is dangerous and serious.

Gibson, who is now 45, said her symptoms started when she was in her early 30s. She suffered headaches, left-sided numbness and occasional vision loss. She was initially diagnosed with migraine headaches.

When similar symptoms continued, Gibson was then diagnosed with transient ischemia attacks (TIAs), which in laymen terms are known as mini-strokes.

Although it was odd for a young person to suffer from TIAs, Gibson said the doctors were perplexed, but they weren't aware that there could be an underlying cause.

Eventually, Gibson suffered three strokes, leaving her with permanent body weakness, vision loss and impaired cognitive problems, such as some memory loss and confusion.

Gibson was diagnosed about 18 months ago. Her diagnosis prompted further investigation into Pardo's condition.

Both sisters now receive the appropriate treatment for APS, which is anticoagulant therapy (blood thinners), such as Coumidin or Lovenox.

Some people who test positive for elevated antibodies, but have no clinical signs or symptoms, may be treated with aspirin, making the formation of clots less likely.

Gibson said she is happy to finally have a diagnosis and to be receiving proper treatment.

"Having APS has been life-changing," Gibson said. "I was very active. It has robbed me of so many things I love to do.

"It is my hope that APS becomes more known, so others receive an early diagnosis and do not lose quality of life at a young age," she added.

It is believed that 1 to 5 percent of the population has APS, and it is a major women's health issue, according to the APS Foundation of America Inc. Web site. About 75 to 90 percent of those affected are women.

Gibson and Pardo were told that their children should be tested for the condition.

The Web site described APS as an autoimmune disorder like lupus and multiple sclerosis. APS may even coincide with those types of autoimmune conditions. The disorder is not well recognized, even within the medical community.

According to the Web site, the features of the syndrome are the development of conditions such as stroke, heart attack, pulmonary embolism and neurological cognitive problems. Therefore, physicians can miss the underlying cause and fail to order the appropriate tests for a proper diagnosis.

The human immune system fights infections by producing antibodies in the blood that bind with foreign invaders, like bacteria and viruses, and destroys and removes them, the Web site said.

According to the Web site, in autoimmune conditions such as APS, the immune system malfunctions and makes antibodies against normal tissue and organs.

These antibodies are called self-reactive and cause damage to the normal function of blood flow. The targets of the self-reactive antibodies are B2-glycoprotein 1 and prothrombin. The condition is diagnosed by assessment of clinical symptoms and laboratory blood tests.

The goal of the APS Foundation of America is to raise awareness and educate both the public and the medical community. For more information on APS, visit online at http://www.apsfa.org

http://tinyurl.com/28zk28

Support the APSFA Today!

2007-07-19T10:02:00.000-05:00

Save $5
when you spend $50 or more!
-----------------------------
Enter the coupon code

TURBOBOUNTY

when checking out.
-----------------------------
Coupon expires 7/23/07... so hurry!

This is really a good coupon. Perfect time to purchase the log book, a t-shirt and tote bag.

Support APS Awareness & the APSFA!

100% of the profits from these products will go to the APS Foundation of America, Inc.

To visit our Cafe Press Store click here: http://www.cafepress.com/apsfoundation

Brought to you by the APS Foundation of America

Rare condition often overlooked

2007-07-02T14:05:00.001-05:00

Rare condition often overlooked
By Shannon Farr
Saturday, June 30, 2007

Two Fairchance sisters with a blood-clotting disorder suffered through years of misdiagnoses along with disabling symptoms and the indignity of being told repeatedly their problems were all "in their head."

Robin Gibson, 45, and her sister, Darla Pardo, 43, were recently diagnosed with antiphospholipid antibody syndrome, or APS.

"Because of the disorder I had a stroke in my brain and lost a lot of my vision," Gibson said.

She is no longer able to drive a car because of her poor vision.

Gibson and her sister have suffered recurring symptoms since childhood.

Symptoms include seizures and complications from holes in the heart valve.

APS causes vein and artery blood clots, multiple miscarriages and strokes in many people, said Dr. Thomas Ortel, of Duke University in Durham, N.C.

He specializes in hematology, has treated hundreds of patients with blood-clotting disorders. Ortel is researching the genetically inherited characteristics associated with APS.

When Gibson suffered her first stroke, it was misdiagnosed as a migraine and she was sent home to begin aspirin therapy.

The disease is often misdiagnosed as a migraine, potassium deficiency or depression, said

Christina Pohlman, 35, co-founder of APS Foundation of America Inc. She was diagnosed with APS six years ago after years of being misdiagnosed.

More women than men suffer from the syndrome, Pohlman said.

Gibson suffers from acute renal failure, and she blames doctors for her and her sister's prolonged suffering.

"Most people are told that it's in their head when they go to the doctor to get help," Gibson said.

APS is detected through blood tests and scanning the body for clots, said Dr. Gale McCarty, associate staff member at Georgetown Hospital in Washington. As a specialist in rheumatology and immunology, she introduced APS research at the hospital in 1982.

"The syndrome is horribly underdiagnosed," McCarty said.

"Half of the 1.5 million lupus patients nationwide suffer from APS and many more are not diagnosed yet," Pohlman said.

APS affects each person differently. Some will have the syndrome by itself, while others will suffer from related disorders as well.

"Robin struggles to keep in step with her everyday routine and continues to suffer from strokes," Pohlman said.

Gibson's sister, Pardo, is in The Uniontown Hospital in Uniontown struggling with blood clots, kidney failure, liver disease and intensive heart disease, Gibson said. All of the health ailments are associated with APS.

"It's a balancing act that really makes you keep your life in check," Pohlman said. "You could have a stroke at any time."

The number of people who have the syndrome is unknown, said Sarah Church, informational specialist at the Genetic and Rare Disease Information Center.

"When I was first diagnosed, I felt like I was the only person in the world with the disease," Pohlman said.

There's not enough people in her area with the disorder to start a support group. People around the nation are pulling together to hold conferences, visit doctors, create a quarterly handout, and chat on-line with people who may have the disease, Pohlman added.

The theme of the June APS awareness month is "Get in the Flow."

© 2007 by The Tribune-Review Publishing Co.

http://www.pittsburghlive.com/x/pittsburghtrib/s_515444.html

APS is a snake in the grass and can bite or kill without warning

2007-06-24T11:13:00.000-05:00

FOR IMMEDIATE RELEASE

Date: 06/24/2007
Contact: Christina "Tina" Pohlman
Phone: 608-782-2626
Website Address: www.apsfa.org
Email Address: apsfa@apsfa.org

APS is a snake in the grass and can bite or kill without warning

Antiphospholipid Antibody Syndrome (APS) can affect anyone at anytime and is a disease that should be tested for more often.

"APS is a snake in the grass and can bite or kill without warning," said Christina Pohlman, President of APS Foundation of America, Inc.

The warning signs for APS include heart attack, multiple miscarriages and stroke. They can also include blood clots, pulmonary embolism (clots in the lungs) and brief stroke-like episodes called transient ischemic attacks (TIAs).

Other features that can be associated with APS include problems thinking clearly (loss of concentration, difficulty with reading comprehension and memory loss), migraine headaches and other neurological symptoms such as partial or total vision loss, dizziness and seizures.

APS is commonly misdiagnosed as other autoimmune diseases such as multiple sclerosis. APS and MS can share similar symptoms. Since MS is more common and known, the false diagnosis can occur, leaving the patient with improper treatment that can possibly result in serious injury and even death.

The APS Foundation of America, Inc. is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization dedicated to spreading awareness and support to those with the disease.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626
Website Address: www.apsfa.org. Email Address: apsfa@apsfa.org

###

Strokes and heart attacks could be caused by APS

2007-06-18T14:25:00.000-05:00

FOR IMMEDIATE RELEASE

Date: 06/17/2007
Contact: Christina "Tina" Pohlman
Phone: 608-782-2626
Website Address: http://www.apsfa.org
Email Address: apsfa@apsfa.org

Strokes and heart attacks could be caused by APS

Antiphospholipid syndrome (APS) is known to cause heart attacks, strokes and transient ischemic attacks (TIA), brief stroke-like episodes.

A heart attack occurs when the supply of blood and oxygen to an area of heart muscle is blocked, usually by a clot in a coronary artery. Each year, over one million people in the U.S. have a heart attack and about one-half die. Unfortunately, many heart attack victims wait two hours or more after symptoms begin before they seek medical help. This delay can result in death or lasting heart damage.

A stroke, or "brain attack," occurs when blood circulation to the brain fails. Brain cells can die from decreased blood flow and the resulting lack of oxygen. There are two broad categories of stroke: those caused by a blockage of blood flow and those caused by bleeding. While not usually fatal, a blockage of a blood vessel in the brain or neck, called an ischemic stroke, is the most frequent cause of stroke and is responsible for about 80 percent of strokes.

A TIA is a transient stroke that lasts only a few minutes. It occurs when the blood supply to part of the brain is briefly interrupted.

It is recommended anyone under the age of 50 who has had a heart attack, stroke or TIA should be tested for APS.

The APS Foundation of America is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization dedicated to spreading awareness and support to those with the disease.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626 Website Address: http://www.apsfa.org Email Address: apsfa@apsfa.org

Are You in the Flow?

2007-06-13T12:01:00.000-05:00

June is APS Awareness Month!

Have you bought your APS Awareness T-shirt or canvas bag yet? Now is a great time to do so and help bring awareness to APS!! We have a large variety of QUALITY items and the clothing comes in a wide variety of colors and sizes! You may even find a little something for Dad! Check out our CafePress store to buy APS Awareness items this June!!

Here is a coupon for your purchase!

Save $5
when you spend $50 or more!
-----------------------------
Enter the coupon code

MOTIONOPTION

when checking out.
-----------------------------
Coupon expires 6/19/07... so hurry!

Support APS Awareness Month!
Our store is at: http://www.cafepress.com/apsfoundation

Antiphospho....what?!

2007-06-11T22:55:00.000-05:00

Antiphospho.....what?!

Add to My Profile | More Videos

APS Linked to Birth Difficulties

2007-06-10T12:42:00.000-05:00

FOR IMMEDIATE RELEASE

Date: 06/10/2007
Contact: Christina "Tina" Pohlman
Phone: 608-782-2626
Website Address: http://www.apsfa.org
Email Address: apsfa@apsfa.org

APS Linked to Birth Difficulties

Antiphospholipid Antibody Syndrome (APS), is found more often in women than men with 90 percent of all APS sufferers being women.

APS is an autoimmune disease that causes blood clots, premature births and even miscarriages.

Women with APS may have difficulties with pregnancy. During pregnancy, women are at higher risk of developing blood clots and preeclampsia. In APS, pregnancies are thought to be lost because blood clots form in the placenta and starve the baby of nutrition. Some women may have trouble getting pregnant, while others may experience repeated miscarriages. Blood clots that develop in the placenta can cause fetal growth problems, fetal distress, preterm birth, or pregnancy loss.

APS pregnancies are not normal. Normal pregnancy is 40 weeks. In APS, it is more common to deliver the baby between 30-35 weeks, and between 3-5 pounds. Once born, the babies do fine.

Over the long term, many doctors recommend women continue to take a low dose of aspirin to reduce the risk of developing dangerous blood clots. Many women with APS are unaware they have the condition, but it can be diagnosed with a blood test. Doctors may consider the diagnosis when a woman has repeated, unexplained pregnancy loss.

Many women who have problems with APS during pregnancy are completely fine when not pregnant. Others do go on to develop problems with clotting. Currently there is no way of telling which women will be unlucky, until a clot actually occurs.

Infertility has also been linked to antiphospholipid antibodies. Testing for these antibodies is becoming routine in infertility clinics.

The APS Foundation of America is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization dedicated to spreading awareness and support to those with the disease.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626 Website Address: http://www.apsfa.org. Email Address: apsfa@apsfa.org

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

2007-06-04T12:03:00.000-05:00

FOR IMMEDIATE RELEASE

Date: 06/03/2007
Contact: Christina "Tina" Pohlman
Phone: 608-782-2626
Website Address: www.apsfa.org
Email Address: apsfa@apsfa.org

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

The APS Foundation of America, Inc. (APSFA) has declared June as National Antiphospholipid Antibody (APS) Awareness Month. We are educating the public and medical community about this disorder, urging people to Get in the Flow!

This disorder threatens to become more common than Lupus and Multiple Sclerosis.

The APSFA is sending petitions to several states to make June APS Awareness Month. The APSFA will be attending conferences, medical seminars, grand rounds and health fairs to share the patient perspective and provide awareness of APS throughout the month of June and also encouraging the community to Get in the Flow. Individual and APSFA fundraisers will be occurring throughout the country to help promote APS awareness and help support the mission.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

The APSFA is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization.

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626
Website Address: www.apsfa.org Email Address: apsfa@apsfa.org

June is APS Awareness Month!

2007-06-01T13:52:00.000-05:00

APS is an abbreviation for Antiphospholipid Antibody Syndrome. APS is also called APLS or APLA in the United States and Hughes Syndrome or Sticky Blood in the UK.

APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.

For more information click the graphic above!

Volume 5 of out Newsletter, "Antiphospho...What?" is available for download!

2007-05-25T10:25:00.000-05:00

Volume 5 of out Newsletter, "Antiphospho...What?" is available for download!

written by the APS Foundation of America, Inc. Enjoy!!! :)

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

We still are looking for articles, book reviews, etc...please email us for more information!

Keywords: APS, APSFA, Lupus, Hughes, Syndrome, Plaquenil, Awareness, DVT, Stroke, Heart Attack, June, warfarin, herbs, Coumadin, INR, Machine, finger, stick

HYDROXYCHLOROQUINE - EVERYTHING OLD IS NEW AGAIN!

2007-05-25T10:24:00.000-05:00

HYDROXYCHLOROQUINE - EVERYTHING OLD IS NEW AGAIN!

By: Gale McCarty, MD, FACR, FACP. Hydroxychloroquine (HCQ, or its trade name-Plaquenil) has a long and honored history of use in systemic lupus erythematosus (SLE) as a general medication to decrease activity of the immune system and decrease symptoms. For years it has been approved for use by the FDA for lupus and rheumatoid arthritis, and has been used most frequently for skin and joint manifestations. It is considered a mainstay of therapy for any patient with SLE by many lupus experts and rheumatologists. It has many mechanisms of action, some related to decrease in the activity of the immune system, and some related to effects on blood clotting mechanisms. HCQ belongs to the class of drugs call anti-malarials, which includes Chloroquine and Atabrine. (This does not mean that anyone thinks that SLE or APS is caused by the agent that causes malaria-like most discoveries in medicine, it was the chance observation that patients with some autoimmune diseases who got anti-malarial drugs to prevent malaria when traveling to likely areas of infection noted their symptoms improved on HCQ). One of the most complete and excellent reviews of all the literature on the anti-malarials to which all patients and their physicians are directed is Dr. Dan Wallace’s Chapter 59 in the Wallace-Hahn Dubois’ Lupus Erythematosus textbook. Another excellent review on APS therapy in general has been published by Dr. Robert Roubey.

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

APSFA*s Blog

2011 Giving Tree

The Fall / Winter 2011 volume of our quarterly newsletter, "Antiphospho...What??"

Summer / Fall 2011 volume of our quarterly newsletter, "Antiphospho...What??"

The Spring / Summer 2011 volume of our quarterly newsletter, "Antiphospho...What??"

JUNE IS APS AWARENESS MONTH: SILENT BUT DEADLY!

Winter / Spring 2011 volume of our quarterly newsletter, "Antiphospho...What??"

The APSFA 2010 Holiday Giving Tree

Fall/Winter 2010 volume of our quarterly newsletter, "Antiphospho...What??"

International Medical Summit Held in Miami to Stimulate Collaborative Clinical Research on Antiphospholipid Syndrome

The APS Foundation of America, Inc Announces World APS Day, June 9th

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

Spring/Summer 2010 volume of our quarterly newsletter, "Antiphospho...What??" is Available

Signature Tag Fundraiser

APS Awareness, Infant Loss Awareness Ribbon & APSFA Logo Lapel Pin Sales

Winter/Spring 2010 volume of our quarterly newsletter, "Antiphospho...What??" is Available

Medical Alert Discount in Honor of DVT Awareness Month

From the Desk of Silvia S. Pierangeli, Ph.D, Chair, APLA 2010

Faces of APS - The APSFA Needs YOUR Help!

FALL/WINTER 2009 volume of our quarterly newsletter, "Antiphospho...What??" is Available

*Exclusive* 2009 APSFA Holiday Ornament

2009 APSFA Giving Tree

`Wipeout' TV show player with rare condition dies

2009 H1N1 Flu (referred to as “swine flu” early on) and Seasonal Flu Information for People with Inflammatory Arthritis or Rheumatic Disease

2009 H1N1 Flu (referred to as “swine flu” early on) and Seasonal Flu Information for People with Inflammatory Arthritis or Rheumatic Disease

How does arthritis affect how I respond to the flu?

What are the symptoms of the flu?

How can I avoid getting and the flu or giving the flu to others?

Is there a vaccine against the 2009 H1N1 flu virus and who is it available for?

Do I need to get a flu shot?

What should I do when I am sick?

For more information:

Volume 14 of the APSFA Newsletter - "Antiphospho...What?"

Preventing Miscarriages

Signs and Symptoms of Antiphospholipid Antibody Syndrome: Get in the Know and Get in the Flow!

APS Often the Culprit Behind Heart Attack and Stroke in Younger Adults

Press Release: APS Linked to Birth Difficulties (2009)

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

Antiphospholipid Syndrome (APS) Education

Volume 13 of the APSFA Newsletter - "Antiphospho...What?" is NOW Available!

Antiphospholipid Antibody Syndrome (APS) Workshop

New Cafe Press Graphics & Gear - Check It Out!

The Antiphospholipid Story

March is Deep Vein Thrombosis (DVT) Awareness Month

Volume 12 of the APSFA Newsletter - "Antiphospho...What?" is NOW Available!

Volume 11 of the APSFA Newsletter - "Antiphospho...What?" is NOW Available!

2008 APSFA Giving Tree

*Exclusive* 2008 APSFA Holiday Ornament

Antiphospholipid Antibody Syndrome (APS) Focus Interview

Volume 10 of the APSFA Newsletter - "Antiphospho...What?" is NOW Available!

June is Antiphospholipid Antibody Syndrome (APS) Awareness month

Volume 9 of the APSFA Newsletter - "Antiphospho...What?" is NOW Available!

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

APS Awareness PSA

Volume 8 of Our Newsletter, "Antiphospho...What?" is available for download!

Deep-Vein Thrombosis (DVT) Awareness Program

Deep-Vein Thrombosis (DVT) Awareness ProgramFeaturing: Melanie Bloom, National Patient Spokesperson, Coalition to Prevent DVT

Blood Clots and Blood Clotting Disorders: Key Issues in Diagnosis, Treatment and Prevention

GoodSearch.com Charity of the Day 2/28/08!

New APSFA Cafe Press Coupon!

Giving Tree 2007 - Thank You!

What is New On MissionFish This Week?

APS FOUNDATION OF AMERICA, INC. JOINS WITH NORD TO CELEBRATE THE 25th ANNIVERSARY OF THE ORPHAN DRUG ACT

New On MissionFish This Week!

Last Minute Shopping? Need Ideas?

2007 APSFA Giving Tree!

*Exclusive* 2007 APSFA Holiday Ornament

This Weekend on MissionFish

This was just added to MissionFish.

What is New On MissionFish This Week?

Volume 7 of Our Newsletter, "Antiphospho...What?"

2007 APSFA Giving Tree!

What's New On MissionFish This Week?

*Exclusive* 2007 APSFA Holiday Ornament

Friends & Family of APS Foundation of America, Inc. E-Store

CellCept: Black Box Warning Re Pregnancy

Blood Clots and Blood Clotting Disorders: Key Issues in Diagnosis, Treatment and Prevention

Volume 6 of out Newsletter, "Antiphospho...What?" is available for download!

*Notice Regarding Mailing List*

Got Gear?

Exclusive 2009 APSFA Holiday Ornament

Exclusive 2008 APSFA Holiday Ornament

Deep-Vein Thrombosis (DVT) Awareness Program
Featuring: Melanie Bloom, National Patient Spokesperson, Coalition to Prevent DVT

Exclusive 2007 APSFA Holiday Ornament

Exclusive 2007 APSFA Holiday Ornament

Notice Regarding Mailing List