Antiphospholipid Antibody Syndrome
 

I have a sibling with Antiphospholipid Antibody Syndrome. Anyone with this autoimmune disease? Is there some kind of inheritance for this condition? Is it familial? Any answer would help. Thanks!

I have APS. I'm adopted so don't have an answer about it being passed down. You are correct, it is autoimmune.

Actually, large numbers of people can test positive for anticardiolipins and NOT have APS.

It is only diagnosed after certain criteria are met: 2 or more positive labs for anticardiolipins (at least 6 weeks apart) AND either several miscarriages or a confirmed thrombotic event.

I was diagnosed after 3 strokes (within one week) and 3 labs positive for anticardiolipins over 18 months. I have also had two amaurosis fugax events, but both occurred after stopping my blood thinners for 48 hours (for a procedure or other reason).

I don't know if your sibling is being treated with anticoagulants, but the condition IS treatable with careful attention.

I'm curious, does your sibling have the livedo reticularis skin rash (it's not really a rash, but more of a visible sign of blood pooling under the skin)?

Does your sibling have other autoimmune diseases?

Hi! Thanks for your reply.
Yes, she has the skin rash. She is very young, just 16 and the diagnosis is very recent. I don't know yet if she has another autoimmune disease. She is under investigation. Two labs positive for APS. I asked about the inheritance because I have myasthenia and a brother had psoriasis (he passed away). I'm very concerned about this so young loved one...
Take care!

What was the reason they looked for APS? Does she have any other symptoms that would indicate other problems (like autoimmune)?

She's so young. They will likely do blood work for other clotting factors (homocystine, c protein, factor V leiden).

There is actually quite a few good sites about APS (I can give you links if you'd like) and I'd be happy to answer any questions as best I can.

It would be pointless to tell you not to worry, but I have never heard of someone being treated with blood thinners unless there is a confirmed thrombotic event, so maybe this was caught early enough to just keep a watchful eye and monitor.

Good luck and best wishes to her.

Hi!
She has something in her left eye. Probably next days I will have more information and will tell you. She has an appointment tomorrow. Thanks again for your attention!