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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?

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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.
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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.
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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]
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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.
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Hi. I'm 16 years old and I have APS, as well. I was diagnosed about 15 months ago. I recently became pregnant with my (now ex-) boyfriend's child. He broke up with me, and I had an abortion (knowing that I would miscarry the baby. When I told him I had the abortion, he got mad at me (He is 120% against abortions, and I knew that) and wouldn't speak to me. It took me nearly 2 months after the abortion to finally contact him to tell him the real reason why I had it. Although I have told him everything, he still does not talk to me. Currently, I only take an aspirin everyday to handle my symptoms, which luckily, have been very mild. I didn't start the aspirin regimen, though, until after I got the abortion. When I saw my doctor before the abortion, clots had already started to form, and I knew there really wasn't any other choice.

So there's my story.. Hope it helps!
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I am 26 and was diagnosed @ 16 when I had a mini stroke. i was misdiagnosed with ITP before that so they knew there was something going on. Ive had lots of issues with the condition and as a young person have suffered with taking care of myself. It's not always easy to do the right thing. As I have grown older and smarter and more health issues have come my way ( DVT, seizures ) I've figured out that I HAVE to take care of myself. I'm on 11mg of Coumadin 

The complications from APLS can be scary and I hope none of you ever have to face them. My appendix burst in nov 2012 and they couldn't remove it right away because my INR was too high. I must have taken my Coumadin twice in a row at some point that week. I had a plasma transfusion and waited to have it removed. I ended up septic and deadly ill with infection. Because of my already weak immune system and all the stuff they were giving me I caught a hospital born infection CDIFF. They had to do another surgery to put in drains to help w the infection. and then a third surgery when the drains were clogged and not working properly. At that point I was ill I was put into a medically induced coma where I stayed for 3 weeks. ventilator, feeding tubes, pic line, the whole nine... I was on life support. Just when things started to look better they found fluid around my heart (2pint) and performed a pericardial window. wether or not that is related to APLS they never figured out but none the less was a major complication. I am only 26 and I was on my death bed. I ended up spending 6 weeks in total @ the hospital , I had to do physical therapy after, had so much atrophy I couldn't walk. I have scars that I will never be happy with. It was a really hard experience to go through. that I have a lot of bad memories from.. and I feel as though APLS is the cause of why it was as complicated as it was. But I should have known better. I should have been taking better care of myself. And even now. I should still be taking better care of myself. So if there's anyone out there reading this.. Don't be me

I almost died from a simple procedure just because I take Coumadin. But Coumadin keeps me alive. Everyday. 

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I'm so sorry, but you were misinformed. There is no guarantee that you will have a miscarriage with APS. Sure, there are extra precautions you have to take, but even micro clots can be fixed with Lovenox. I also have APS and have a handsome, healthy, and strong 20 year old son. And yes, there were complications as well as 2 miscarriages after him. Please don't ever have another abortion because you MIGHT have a miscarriage. And don't use APS as an excuse to have one either.
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