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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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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