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Manomura

Lupus Anticoagulant and Protein S Deficiency

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I was recently diagnosed with both Lupus Anticoagulant and Protein S deficiency. I had cerebral thrombosis, and have been put on Warfarin for life. Just wanted to know if anyone has both these disorders, and what your experience was like. Also, if you have any information on having both these disorders.

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Hi, I was diagnosed with both last January after I had a stroke. I am a 32 year old female and I believe the birth control I was on (Yaz) and the undiagnosed Protein S was the problem. My hemotologist told me that the LA could have been a product of the stroke and I believe he is going to do another blood panel in the coming months to see if it is still present in my blood. I am on coumadin for life myself.

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Thanks for your reply. Very scary to have both conditions. I was on the pill also, but was not on yaz. My clot happened in 2012. No episodes after that. Please keep me updated of our condition and I will do the same. Best wishes to you.

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Hi, I'm glad you have found each other!

From what I have read, LA is associated with Antiphospholipid Syndrome (APS) also known as Hughes Syndrome so you might find more info on it by searching with that name. It is an acquired thrombophilia and PSD is a genetic one so you have been a bit unlucky to end up with both. Even with both these conditions you might not have had a clot but adding hormonal contraception probably tipped the balance.

Have you been given good advice on contraception without taking the pill?

This is a really long audio of a couple of hours but well worth listening to while you're doing something else! It is all the speakers at the Hughes Syndrome Foundation patients day last year and they talk about causes, treatments and outlook for patients, some of which might be useful to you.

https://www.youtube.com/watch?v=7dKM-DjQIuo

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I am so glad to have re-found this site. I read this message and was hopeful. 6mths after a nasty Renal Vein DVT that has now been chronic for the last 16 years I got very sick. About 2 years later I was diagnosed with CFS/Fibro...I know this isn't the lupus, but I"m not sure any of the tests for this have been done. I'm going to have my rhum. doctor look through his records and see if this has been checked out. I know it may sound bad to say, but I really hope it is the Huges Syndrome...there seems to be at least a somewhat logical way to manage it. CFS/Fibro has my barely getting by. So, thanks of the hope!

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