Our Mission Statement

Founded in 2005, 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 for Antiphospholipid Antibody Syndrome (APS) in an effective and ethical manner.

Our Goals

- To offer understanding and support to individuals, family, friends, and care givers of Antiphospholipid Antibody Syndrome.

- To offer information about and education on Antiphospholipid Antibody Syndrome.

- To support research regarding Antiphospholipid Antibody Syndrome by keeping the latest information available and referring people to such agencies who do research.

- To raise funds to provide information and education through public donations, grants, fundraisers, sponsorships, and bequests.

- To bring national focus to Antiphospholipid Antibody Syndrome in the United States.

The APS Foundation of America, Inc. is the leading 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. We are a volunteer-run, community-based, non-profit organization.

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 (DVT), Pulmonary Embolism (PE), 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.

Antiphospholipid Antibody Syndrome (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 APS Foundation of America, Inc's vision is to bring 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.

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Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? about 2 years ago

Clinicaltrials.gov


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? about 2 years ago

Nope, not really. It is antibody control that is what they are looking at for us.


Commented on INR 7.5 & bi-pass surgeries over 2 years ago

Written by: Stephan Moll, MD "Nattokinase is not a substitute for Warfarin! If you take it – don't count on it having any clinical effect. It has also not been studied regarding its safety profile, particularly when taken together with Warfarin or aspirin. " http://www.apsfa.org/docs/APSFAVol6Summer2007.pdf There is no alternatives to prescription medications that are tried and true. http://www.apsfa.org/links/links32.htm


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? about 2 years ago

Xarelto and Pradaxa.


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? about 2 years ago

Yes, they are inaccurate in APS patients. Citations: http://www.apsfa.org/fingerstick.htm


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? about 2 years ago

Also are you using a finger stick machine?


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? about 2 years ago

We see many APS patients clotting on this drugs. We currently have about 20 clients participating (that we know of) in the class action suits for clotting on the drug. The class suit attorneys are taking them. There are no released studies of safety in APS patients. Our medical advisers are not recommending them at this time.


Commented on INR gone up over 2 years ago

Sorry your INR is still crazy. Can I ask if you have APS? Because if you do finger stick machines are not accurate in APS patients and we are a large amount of citations including from the manufactures to support the stance. Have you discussed with them about low dose Vitamin K. My INR was all over the place, now I can eat and drink what I want, when I want and I am stable. Only have to go in once a month now. I can provide citations if you are interested.


Commented on INR is too thin over 2 years ago

If you have bloody stools, you need to be going to the ER, not cramming your body with Vitamin K and causing a clot. Vitamin K is a consistent thing. Not a roller coaster thing.


Commented on INR gone up over 2 years ago

Oh yep, I am betting that is your culprit. The antibiotics. It will be under control by then, I am sure. Are they bridging your to Lovenox for your surgery?


Commented on does Stress affect INR ? over 2 years ago

Yes, for me it usually drags my INR is the toilet. So, try what ever it takes to relax: read a book, go for a walk, meditate, listen to music, something to try to give yourself 15 minutes to yourself to reduce the stress.


Commented on INR 7.5 & bi-pass surgeries over 2 years ago

APS can cause the blockages. We have plenty of clients with multiple surgeries in the same areas due to reclotting. Scarring increases the clotting more as there is no longer a clear path for the blood to flow. CAPS may also be a consideration. Also there is the question what they have done to control the antibodies.


Commented on INR 7.5 & bi-pass surgeries over 2 years ago

Finger stick machines are not accurate in APS patients especially with the Lupus Anticoagulant. Citation: http://www.apsfa.org/fingerstick.htm Options since he is scarring that could be discussed with his doctors are a port. But a finger stick machine would only make his INR even more unstable.


Commented on INR 7.5 & bi-pass surgeries over 2 years ago

Well, a consistent amount. So, if that is a McDonald's Salad for example. Make it that size salad daily. Learn the amount of Vitamin K in your greens to get an idea so you are consistent. The nice thing being on low dose Vitamin K, I can eat a ton today, none tomorrow, a little the next day, have some wine the follow day and it doesn't really mess my INR up. Now, cranberries and cranberry products are my exception - even when being consistent. Here is a site to help you with the Vitamin K levels: http://ndb.nal.usda.gov/ndb/search/list Yes, we are new to the site as well. :)


Commented on INR 7.5 & bi-pass surgeries over 2 years ago

One, the finger stick machine is NOT accurate in APS patients, period. That is part of the problem. Vein draw ONLY. Citations: http://www.apsfa.org/fingerstick.htm I have Lupus, APS and possible MS. I had a stroke due to that lovely little finger stick machine. Now, after that, if it still doesn't settle, I would discuss with your hematologist low dose Vitamin K. My INR is stable as a rock now and I can eat what I want within reason. Citation: Using Vitamin K to Smooth-Out Fluctuating INRs If you walk into a dark room and switch on a 3-way light you notice a huge increase in the amount of light. If you switch to the next higher level, you do not notice as much change even though the increase is the same number of watts. It appears that a similar thing happens when someone takes in very little vitamin K from eating vegetables. If this person then gets a little more vitamin K than usual, the INR can be thrown off. To get around this, some warfarin managers have tested giving people a known amount of vitamin K. Then they managed whether or not the INRs became more consistent. A study done in the UK followed 70 people who had unstable INRs. They were divided into two groups – those getting 150 mcg of vitamin K daily and those getting a placebo. The people getting the vitamin K had more consistent INRs than the people getting the placebo. Each person’s INRs for 6 months on the study were compared with their INRs for 6 months before the study. It appears that taking a known amount of vitamin K daily and adjusting the warfarin dose upward to accommodate this, results in more stable INRs. Reference: Sconce E. et al. Vitamin K supplementation can improve stability of anticoagulation for patients with unexplained variability in response to warfarin. Blood. 2006; Nov 16. Christina "Tina" Pohlman President, Executive Director, Co-Founder & Lupus/APS Patient ~ BS Public Health Education APS Foundation of America, Inc Website Address: http://www.apsfa.org Facebook Fan Page: http://www.facebook.com/APSFA The APS Foundation of America, Inc is a 501(c)3 Public Charity. The APS Foundation of America is not intended to replace standard doctor-patient visits, physical examination, and medical testing. Information given to members are only an opinion. 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 APS Foundation of America is not intended to diagnose, treat, or cure. This site is for informational purposes only.


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