Anti-phospholipid Syndrome

Hi. I suffer from anti-phospholipid, or Hughes syndrome. It is an autoimmune disorder. In the time when I was diagnosed, I thought I have Alzheimer’s disease. I take Plaquenil to treat my skin rash and pain. I would like to hear from somebody with experience how can I help myself? How to live with anti-phospholipid syndrome?

Hi. I suffer from Anti-phospholipid Syndrome too. I had bad headaches when I was a teenager, and now, in my 40s, they are back. I also have double vision. Take Omega-3 (fish oil), it will reduce the risk of thrombosis. This is the only home treatment that is effective. If you are lady, and pregnant, don`t use fish oil because it contains large amounts of Vitamin A. There is no cure for our disease, but long term (lifelong) treatment can relieve the symptoms. I had to quit smoking and I exercise regularly.

Hi, I have anti-phospholipid syndrome. I was diagnosed five years ago, after a series of miscarriages - and loosing a child two days aftr birth. At time I exprience terrible headaches, memory lost, numbness of the joints and fatigue. I recently had a baby, I was told that there is a 30% success rate for women with APS. I had to inject myself with Lovenox for my entire pregnancy and another six weeks after having the baby. It helps to stay active , excercise and drink a lot of fluids.

I was diagnosed with antiphospholipid syndrome age 19 and told I would never be able to carry a baby. I had all the symptoms you describe and told there was no cure. One happy accident named Jack later, I no longer have antiphospholipid syndrome and carried him full term?? I injected throughout my pregnancy and worried myself sick that I'd lose him. Having Jack was a miricle in more ways than one.[/img]

Hi. I was diagnosed as having the lupus anticoagulation factor when I was about 16 years old (i'm 23 now). I had just been diagnosed with very mild type 1 von willie brans and the doctors focused on that more than anything else. They mentioned the lupus anticoagulation factor in passing but never told me what it entailed. I worry because I do have another autoimmune disorder and I have no idea if I should be worrying about antipospholipid syndrome. My husband and I are considering having kids in the next few years, but I'm starting to think that won't happen. I have endometrious and a tipped uterus, so may chances of getting pregnant are already not so good. I have such bad endormetrious and the only cure is to have a hysterectomy is but I'm young and I can't give up the hope that someday I'll have a family, but the more I research the more I think it may never happen for me. I was hoping someone could give me an idea of what to watch out for. I'm going to see my gyno soon, so I was wondering if anyone could give me an idea of what to discuss with my doctor.