Sunday, November 05, 2006

*Exclusive* 2006 APSFA Holiday Ornament

We are offering this exclusive holiday ornament on our CafePress site. The ornament will feature a different snowflake every year, so this is truly a collector's item. The ornaments are $8.00 and $2.00 from each purchase goes to the APSFA. This design is only available until Dec 31, so you'll need to act fast!

Click HERE to buy our 2006 APSFA holiday ornament.

2006 Holiday Giving Tree!


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.

This donation will enable us to keep our unique non-profit organization operating and help promote awareness of Antiphospholipid Antibody Syndrome.

http://www.apsfa.org/givingtree.htm

Friday, October 27, 2006

APSFA in Stroke Connections!

We made it into the American Stroke Association's Stroke Connection Magazine. The November/December 2006.

I call that a nice sized ad! :)





Friday, October 20, 2006

Home INR Machines and Antiphospholipid Antibodies

Finally - someone has spoken up and said these machines do not work with us patients....that you are really playing Russian Roulette!

http://www.fvleiden.org/ask/94.html

Q."I bought a home Coaguchek® INR machine. My insurance company refused to pay for it, so I paid for it out of my own money, close to $ 2000. I have antiphospholipid antibodies and am on warfarin. Initially, I did many comparisons between the machine and hospital-testing INRs, before I and my doctor accepted the machine's numbers. Things were initially working fine. But recently I noticed that there was a discrepancy between my home INR machine (which read an INR of 7.8) and a hospital INR (which was 3.5). I ran all the controls for the machine (liquid and electronic) and they all ran fine. I called the company. They said their machine was fine. I bought a new box of test strips and the discrepancies were still there. I am done using the machine. I will deal with the hassle of going to the lab. At least I know those INR's are correct. I am really disgusted at what a waste of money the machine was."

A. Home INR machines do not give accurate readings in about 1/3 rd of patients with antiphospholipid antibodies who are on warfarin. This is not due to the machine malfunctioning, but likely due to antibodies interfering with the test method of the home INR machines

In one third of patients with antiphospholipid antibodies the INRs read by the home INR machines are unreliable: (a) they either read too high, compared to INRs tested in a laboratory from an i.v. stick (reference 2), or (b) the instruments flash up an error message (reference 1). This inaccuracy is likely caused by the presence of the antiphospholipid antibodies. Since antibody levels can fluctuate over time, the instrument may give accurate readings at times when the antibody levels are low, but inaccurate ones at times when the levels are higher. This is a phenomenon not unique to the Coaguchek® instrument, but is also seen with the ProTime® and the INRatio® instruments (reference 1,2). In patients who do not have antiphospholipid antibodies the home INR machines give reliable readings and are a good way to monitor warfarin therapy (ref. 3).

Personal Comment:
Because of the potential inaccuracies of home INR machines in patients with antiphospholipid antibodies, I prefer to see these patients not use home INR machines, but have their warfarin monitored with i.v. blood draws through an office or hospital laboratory. However, if a patient with antiphospholipid antibodies decides to use a home INR machine, I recommend that initially and every so often thereafter, such as every 6 months, the INR of the machine be compared to the INR obtained at a laboratory. If the machine gives unreliable readings, the patient should switch to i.v. stick INR measurements through a laboratory. Alternatively, the patient could correlate the INRs obtained with the home INR machine to the laboratory INR, and thus determine his/her unique therapeutic range with the machine. The patient could then continue using the machine.

References:

Perry SL, Samsa GP, Ortel TL: Point-of-care testing of the international normalized ratio in patients with antiphospholipid antibodies. Thromb Haemost 2005 Dec;94(6):1196-202.
Moll S, Wobbleton DL, Misita CP, Bryant B, Malone R, Musty M: INR Determination by plasma-based methods versus point-of-care instruments in patients with antiphospholipid antibody syndrome on anticoagulants. Int Soc Thromb Haemost meeting; Sydney, Australia, Aug 2005. J Thromb Haemost. 2005 Aug;3(suppl 1);abstract.
Yang DT, Robetorye RS, Rodgers GM: Home prothrombin time monitoring: a literature analysis. Am J Hematol 2004;77:177-186.

Roche Diagnostics Announces Nationwide Recall on Medical Device Used to Determine Blood Clotting Time

Roche Diagnostics Announces Nationwide Recall on Medical Device Used to Determine Blood Clotting Time

Contact:
Roche Diagnostics' Point-of-Care Technical Service Center 1-800-820-0995

FOR IMMEDIATE RELEASE -- October 19, 2006 -- Roche Diagnostics is notifying users of an important recall of all CoaguChek PT test strips currently in the market, due to a potential for a test strip defect that may cause falsely elevated test results. The company has identified the root cause and is instituting corrective action with highest priority. To date, the company has confirmed one incident and its internal investigation suggests that a small percentage of strips may be affected. To date, no deaths, illnesses or injuries have been reported due to this issue.

CoaguChek PT test strips are used by patients in the home and by professionals in medical settings to determine blood clotting time of patients taking anti-coagulants, also known as blood thinners. Blood thinners are used to treat patients with a potential for blood clots, for example, patients with heart valve replacements, certain types of heart disease or blood clots in their legs. Incorrect results may have serious or life threatening consequences because patients may be improperly treated.

Roche Diagnostics has determined the potential for a test strip defect when insufficient active ingredient (thromboplastin) is applied to the test strip, possibly causing falsely elevated results. As a result of the unpredictable positive bias, patient test results may be falsely elevated. This can result in an incorrect dose of anti-coagulant or unnecessary corrective measures to reduce the effect of circulating anti-coagulants. Both incorrect treatment choices could put patients at risk for blood clots.

Roche Diagnostics is notifying all home users of the CoaguChek PT test strip to immediately discontinue use of and discard the product as well as to consult with their health care provider to determine alternate testing methodologies and clinical implications. U.S. customers with questions or concerns should call Roche Diagnostics' Point-of-Care Technical Service at 1-800-820-0995.

Roche Diagnostics is notifying all health care professionals who use the CoaguChek PT test strip to institute 'duplicate testing' - or two strips on each patient - using different lot numbers to reduce the risk of bias. If health care professionals require another lot to enable duplicate testing, they are encouraged to call their medical supply distributor. For general questions, health care professionals should call the company's Point-of-Care Technical Service Center at 1-800-820-0995. These actions must remain in place until the issue has been resolved and health care professionals are supplied with unaffected replacement product.

Letters are being sent to customers, providers and physicians - including additional information regarding this voluntary action. Roche Diagnostics is working with its affiliates worldwide to coordinate appropriate activities. Any adverse reactions experienced with the use of this product, and/or quality problems should also be reported to the FDA's MedWatch Adverse Event Reporting program online http://www.fda.gov/medwatch/report.htm by phone 1-800-FDA-1088, or by returning the postage-paid FDA form 3500 [which may be downloaded from http://www.fda.gov/medwatch/getforms.htm by mail to MedWatch, 5600 Fishers Lane, Rockville, MD 20852-9787 or fax 1-800-FDA-0178. This action is being taken by Roche Diagnostics with the knowledge of the U.S. Food and Drug Administration.

http://www.fda.gov/Medwatch/safety/2006/safety06.htm#CoaguChek

http://www.fda.gov/oc/po/firmrecalls/roche10_06.html

Home INR Machines and Antiphospholipid Antibodies

Finally - someone has spoken up and said these machines do not work with us patients....that you are really playing Russian Roulette!

http://www.fvleiden.org/ask/94.html

Q."I bought a home Coaguchek® INR machine. My insurance company refused to pay for it, so I paid for it out of my own money, close to $ 2000. I have antiphospholipid antibodies and am on warfarin. Initially, I did many comparisons between the machine and hospital-testing INRs, before I and my doctor accepted the machine's numbers. Things were initially working fine. But recently I noticed that there was a discrepancy between my home INR machine (which read an INR of 7.8) and a hospital INR (which was 3.5). I ran all the controls for the machine (liquid and electronic) and they all ran fine. I called the company. They said their machine was fine. I bought a new box of test strips and the discrepancies were still there. I am done using the machine. I will deal with the hassle of going to the lab. At least I know those INR's are correct. I am really disgusted at what a waste of money the machine was."

A. Home INR machines do not give accurate readings in about 1/3 rd of patients with antiphospholipid antibodies who are on warfarin. This is not due to the machine malfunctioning, but likely due to antibodies interfering with the test method of the home INR machines

In one third of patients with antiphospholipid antibodies the INRs read by the home INR machines are unreliable: (a) they either read too high, compared to INRs tested in a laboratory from an i.v. stick (reference 2), or (b) the instruments flash up an error message (reference 1). This inaccuracy is likely caused by the presence of the antiphospholipid antibodies. Since antibody levels can fluctuate over time, the instrument may give accurate readings at times when the antibody levels are low, but inaccurate ones at times when the levels are higher. This is a phenomenon not unique to the Coaguchek® instrument, but is also seen with the ProTime® and the INRatio® instruments (reference 1,2). In patients who do not have antiphospholipid antibodies the home INR machines give reliable readings and are a good way to monitor warfarin therapy (ref. 3).

Personal Comment:
Because of the potential inaccuracies of home INR machines in patients with antiphospholipid antibodies, I prefer to see these patients not use home INR machines, but have their warfarin monitored with i.v. blood draws through an office or hospital laboratory. However, if a patient with antiphospholipid antibodies decides to use a home INR machine, I recommend that initially and every so often thereafter, such as every 6 months, the INR of the machine be compared to the INR obtained at a laboratory. If the machine gives unreliable readings, the patient should switch to i.v. stick INR measurements through a laboratory. Alternatively, the patient could correlate the INRs obtained with the home INR machine to the laboratory INR, and thus determine his/her unique therapeutic range with the machine. The patient could then continue using the machine.

References:

Perry SL, Samsa GP, Ortel TL: Point-of-care testing of the international normalized ratio in patients with antiphospholipid antibodies. Thromb Haemost 2005 Dec;94(6):1196-202.
Moll S, Wobbleton DL, Misita CP, Bryant B, Malone R, Musty M: INR Determination by plasma-based methods versus point-of-care instruments in patients with antiphospholipid antibody syndrome on anticoagulants. Int Soc Thromb Haemost meeting; Sydney, Australia, Aug 2005. J Thromb Haemost. 2005 Aug;3(suppl 1);abstract.
Yang DT, Robetorye RS, Rodgers GM: Home prothrombin time monitoring: a literature analysis. Am J Hematol 2004;77:177-186.

Friday, August 18, 2006

Shopping for the APS Foundation of America, Inc.

http://www.apsfa.org/shopping.htm

We've discovered a great way to raise money for the APS Foundation of America, Inc. and it doesn't cost me any extra time or money.

All you do is start your online shopping at www.apsfa.org/shopping.htm and buy the gifts and things you need everyday at brand name retailers -- including Amazon.com, Dell, J.Crew, Martha Stewart, Gap, L.L. Bean, 1-800-FLOWERS.com, OfficeMax.com and more than 350 others. Just be sure to designate the APS Foundation of America, Inc. as your charity.

At no extra cost to you, up to 35% of every purchase you make automatically goes to the APS Foundation of America, Inc.!

So remember, if you're going to buy online, BuyFor Charity at: http://www.buyforcharity.com.

One more thing! Help others make a difference by sending this email to friends and family who are ready to make a change and support the APS Foundation of America, Inc. Just think... if everyone who shops online remembered to shop through BuyForCharity.com, what a huge difference we'd make for the all the charitable organizations that make our world a better place!

Do You Use a Home INR Machine??? We need your story!!

The APS Foundation of America, Inc. planning a "testimonial" page for people to turn to when deciding whether or not to buy/use the home INR machines (ex, Coagucheck, HemoSense, etc).

We're looking for positive and negative stories of the machine(s) that you have used. Please include your diagnosis and cost of the machine when all was said and done. We would like to use your first name and last initial and your State or Country.

Please email us at apsfa@apsfa.org for more information!

Monday, August 07, 2006

Need Flowers?

The APS Foundation of America, Inc. has partnered with flowerpetal.com to provide you a state-of-the-art shopping experience and unparalleled service for purchasing flowers and gifts online.

How does it work? flowerpetal.com, a Las Vegas-based e-commerce provider servicing the flower and gift industry, handles order processing, fulfillment and customer service, all backed by their 100% Satisfaction Guarantee. 12% of your purchases on this site (excluding tax) benefit our organization and its cause. You may also make an optional donation at the end of the purchase process.

Thursday, August 03, 2006

SERONEGATIVE ANTIPHOSPHOLIPID ANTIBODY SYNDROME (SNAPS)…AND SNAPPING TO IT!!

By: Gale McCarty, MD, FACR, FACP “You don’t have the syndrome because your tests are low level or negative…” or “You have livedo, a heart valve problem, and thrombocytopenia, but these aren’t listed as criteria for diagnosis” are comments made frequently by healthcare providers from many specialties to patients with clinical features suggesting the Antiphospholipid Antibody Syndrome (APS).

http://www.apsfa.org/docs/APSFAVol2Summer2006.pdf

Saturday, July 08, 2006

GoodSearch.com Fundraiser

What if APS Foundation of America - APSFA earned a penny every time you searched the Internet? Well, now we can!

GoodSearch.com is a new search engine that donates half its revenue, about a penny per search, to the charities its users designate. You use it just as you would any search engine, and it’s powered by Yahoo!, so you get great results.

Just go to http://www.goodsearch.com/ and be sure to enter APS Foundation of America - APSFA as the charity you want to support. Just 500 of us searching four times a day will raise about $7300 in a year without anyone spending a dime! And, be sure to spread the word!

Wednesday, April 12, 2006

APS & Thrombophilia Support Groups

At the APS Friends & Support site, you read messages from others under headings interesting to you. You can start new messages or add comments to the string of messages that already exist.

It can be found by going to http://www.apsforum.com.

A forum run by Heidi & Tina founders of the APS Foundation of America, Inc., a non profit organization. This forum is an information source and a friendly support group for people who have Antiphospholipid Antibody Syndrome or for anyone who's lives are touched by it. It is sometimes referred to as APS, APLS, or APLA and is known as Hughes Syndrome or "Sticky Blood" in the UK.

APS is an autoimmune clotting disorder that causes recurrent clotting events including premature stroke, repeated miscarriages, phlebitis, venous thrombosis and pulmonary thromboembolism.If this disease touches your life in some way, please feel free to join in our discussions! :) We're glad to have you visit!

bloodclotting-disorders-thrombophilia-HughesSyndrome: http://health.groups.yahoo.com/group/bloodclotting-disorders-thrombophilia-HughesSyndrome/

Anti-Phospholipid_Antibody_Syndrome: http://health.groups.yahoo.com/group/Anti-Phospholipid_Antibody_Syndrome/

Antiphospholipid_Antibody: http://health.groups.yahoo.com/group/Antiphospholipid_Antibody/

AntiphospholipidAntibodySyndrome: http://health.groups.yahoo.com/group/AntiphospholipidAntibodySyndrome/

Brain Talk Communities: http://brain.hastypastry.net/forums/forumdisplay.php?f=267

APS-Syndrome: http://health.groups.yahoo.com/group/APS-Syndrome/

thrombosis: http://health.groups.yahoo.com/group/thrombosis/?yguid=123337734

APSgroup-USA: http://health.groups.yahoo.com/group/APSgroup-USA/

Antiphospholipid Antibody Syndrome Support: http://groups.msn.com/AntiphospholipidSyndromeSupport

Basic APS Links

DISCLAIMER: These webpages are not intended to replace standard doctor-patient visits, physical examination, and medical testing. Information given to members are only an opinions. All information should be confirmed with your personal doctor. Always seek the advice of a trained physician in person before seeking any new treatment regarding your medical diagnosis or condition. Any information received from these webpages are not intended to diagnose, treat, or cure. This site is for informational purposes only.

If you think you may have a medical emergency, call your doctor or 911 immediately.

APS Foundation of America, Inc
The APS Foundation of America, Inc. is dedicated to fostering and facilitating joint efforts in the areas of education, support, research, patient services and public awareness of Antiphospholipid Antibody Syndrome in an effective and ethical manner.

Antiphospholipid Syndrome Collaborative Registry (APSCORE)
This is for all who have expressed interest in the Antiphospholipid Syndrome Collaborative Registry.This site will be updated on a regular basis with relevant research and news.Please email Gail Buxton if you have any questions or comments at:
Gail Buxton, Study CoordinatorAntiphospholipid Syndrome Collaborative Registry (APSCORE)University of North Carolina at Chapel Hill
Campus Box #7280
Chapel Hill, NC 27599-7280
919-966-0572 (o)
919-966-1739 (f)
buxton1@med.unc.edu

Welcome to The National Alliance for Thrombosis and Thrombophilia (NATT)
The National Alliance for Thrombosis and Thrombophilia (NATT) is a nationwide, community-based, volunteer health organization formed in August 2003. Committed to preventing and treating the array of major health problems caused by blood clots, NATT’s charter members were visionary patients attending a thrombosis and thrombophilia awareness meeting at the Centers for Disease Control and Prevention.

eMedicine - Antiphospholipid Syndrome : Article by Steven Carsons, MD

Factor V Leiden / Thrombophilia Support Page - living with thrombophilia

eMedicine - Antiphospholipid Antibody Syndrome : Article by Barry L Myones, MD

Unusual Manifestations of the Antiphospholipid Antibody Syndrome

HSS - Conditions & Treatments : Antiphospholipid Syndrome

THE CATASTROPHIC ANTIPHOSPHOLIPID SYNDROME (CAPS)

eMedicine - Antiphospholipid Syndrome : Article by Amiel Tokayer, MD

Antiphospholipid Antibody Syndrome

Hello and Welcome!

Hello and Welcome!

Since you have come here looking for Information about Antiphospholipid Antibody Syndrome, (or APS, APLS, APLA etc.) we have provided you with some links to get you started.

If you are newly diagnosed and have questions, we suggest that you come visit the APS Foundation of America, Inc. site at www.apsfa.org to find support and the answers you may have.

We also have the most up to date links on our APS Foundation of America, Inc Links page at www.apsfa.org/links.htm.

Hopefully this blog will help steer you in the right direction to get the answers and the information you are seeking.

Wishing you Great Health!
The APS Foundation of America, Inc Staff