The Faces of APS

Wednesday, April 12, 2006

New to APS?

Have you recently been diagnosed with Antiphospholipid Antibody Syndrome? Not sure where to start? The diagnosis itself can be a little bit overwhelming. We've compiled a list of tips for people who are newly diagnosed with APS from people who have APS.

These tips did NOT come from a Doctor or anyone in the medical profession.

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

Related Publications

These are recommended reads on APS. We have also provided links to purchase the ones that are available at Amazon.com.

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

The APS Foundation of America, Inc. does not endorse any of the above books. Most were recommended to us by other members.

Rare Diseases Clinical Research Network


The Rare Diseases Clinical Research Network was created to facilitate collaboration among experts in many different types of rare diseases. Our goal is to contribute to the research and treatment of rare diseases by working together to identify biomarkers for disease risk, disease severity and activity, and clinical outcome, while also encouraging development of new approaches to diagnosis, prevention, and treatment.

Antiphospholipid Syndrome Collaborative Registry (APSCORE)


The Antiphospholipid Syndrome Collaborative Registry (APSCORE), sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the National Center on Minority Health and Health Disparities (NCMHD). The purpose of this national registry is to collect and update clinical, demographic, and laboratory data on patients with Antiphospholipid Syndrome (APS), as well as patients with antiphospholipid antibodies who do not have other symptoms commonly associated with APS. The registry also serves as a repository of blood samples from those enrolled in the registry.

APS on Mystery Diagnosis!



Did you catch the segment about APS on Mystery Diagnosis?? The show was called "Falling through the cracks" and it aired on March 6th on the Discovery Health Channel. Check your local listings for the rerun!

Would you like to buy Lupus Wear?



There are a NUMBER of APS, Lupus, Thrombosis, & Factor V Leiden Awareness Items located at this CafePress store http://www.cafepress.com/apsfoundation

Looking for FVL Wear?



There are a NUMBER of APS, Lupus, Thrombosis, & Factor V Leiden Awareness Items located at this CafePress store http://www.cafepress.com/apsfoundation

Thrombosis Wear



There are a NUMBER of APS, Lupus, Thrombosis, & Factor V Leiden Awareness Items located at this CafePress store http://www.cafepress.com/apsfoundation

Other APS Gear



There are also some fun items located at http://www.cafepress.com/apsfoundation

Would you like to buy APS wear?






There are a NUMBER of APS, Lupus, Thrombosis, & Factor V Leiden Awareness Items located at this CafePress store http://www.cafepress.com/apsfoundation.

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!

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 HillCampus Box #7280Chapel 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 & 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