Welcome I would like to talk to anyone who has this blood disorder. I have only met one person who has it like me. She had a massive stroke and I had multiple strokes. I would like some information as to what other people went throught to find what they had like I did. I diagnosed after a 10 months wait and it was from my second neurologist. Looking forward to hearing from someone

Hi Lala - I just discovered your post. I am the Director of the Sneddon's Foundation. Sneddon's Syndrome is a whole lot like APS - in fact, doctors used to think they were the same disease. I wanted to let you know that there is a whole community of people like you out there. Pretty much everyone in the Sneddon's community described "falling through the cracks of the medical system" as you have. I experienced it myself for twelve years - I'm not kidding! Anyway, I wanted to make sure, first, that you're being treated with coumadin (aka "warfarin") to protect you from further stroke. And, to let you know that there is a foundation for APS and it seems to have a nice community of members. I'm not sure of the website, just google APS foundation and I'm sure you'll find it. Please feel free to write to me at dianeoleary@earthlink.net, and to visit our website at www.sneddonsyndrome.org. Wishing you all the best - Diane O'Leary

Hi, I've had APS for about 2years now, since i was 17. there was a lump in my throat which they found out to be a blood clot. after more than a week of tests they concluded that i had APS. it came from nowhere, i had hardly ever been ill before, or suffered from any thrombosis, clotting or strokes etc. i don't really understand how i suddenly became ill with this syndrome and have never spoken to anyone about it apart from family and friends. i take warfarin and hydroxychloroquine for life now, and sometimes i think do i really need to take it all the time. i am only 19 and don't know anyone else who has APS. i would love to talk more to others about it

Hi There Kgirl - I don't know if you're still checking the site, but I know another girl your age who has Sneddon's Syndrome, which is very closely related to APS. I can put the two of you in touch if you like - Hope you're well - Diane (aka "Ladybloobalot")

I am a wife of a man with APS but he has not experienced any clotting, TBI's, or strokes. His has affected his organs and neurologic more than anything. He is a rare case of an APS patient that has not experienced much of the common affects from this disorder. I recommend also joining the APSFA.org forum as one of the facilitators and founders of the website lives just a few minutes from me. This forum has been great and the information they have on their website is endless as they have many Dr's that are part of the membership and continued studies on this disorder that is often missed in diagnosing. My husband was initially diagnosed with APS in 1995 but they were only telling him to take an aspirin a day until in April of 2009 he had a gran-mal seizure and we have been seeing specialists ever since. APS is only one of the health issues my husband faces since he is a 2 time Gulf War Veteran and has numerous service related conditions. APS only exasperates some of his conditions.