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Re: Thrombotic Thrombocytopenic Purpura

Re: Thrombotic Thrombocytopenic Purpura

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Posted by Carmen Roby on June 27, 2000 at 11:20:01:

In Reply to: Thrombotic Thrombocytopenic Purpura posted by Carla on November 15, 1999 at 20:51:45:

Hi my name is Carmen and my husband has had TTP since May 4, 1992. He's a chronic case, with the shortest interval between bouts being a few weeks to going 23 months before the next onset. He was 32 at the beginning of the disease, now 40, and doesn't have AIDS can't be drug related or pregnancy related... He had 3 TTP related strokes the first time he got the disease but none since. He is currently in the hospital with yet another episode,this time it's been 8 months since he last went in. My question is about alternate treatments, the apheresis works well for him usually, and he pulls out of it and comes home...but it always comes back. (three times it was a bit scarier, because he wasn't responding to treatment) He's been on prednisone, persantine, none of which have really helped him, the TTP just keeps coming back. I've heard about spleen removal for chronic cases, is this something that helps one time or could it possibly help him stay TTP free? also, the Vincristine (SP) drug..what exactly is it and what does it do? Is there anything else out there that someone can help me with? I'm desperate here, I would appreciate any links/advice someone could give me...the TTP is destroying us both financially and emotionally, I have nightmares about waking up and finding him dead next to me because I didn't notice the symptoms soon enough...Any response would be greatly appreciated, whether you know of what else to try or not..I've never known anyone else that had this problem to talk to about it...Thanks in advance, Carmen

: I am 28 years old. Two years ago I was diagnosed with TTP. As a result of this disease, I had to have a kidney transplant. My transplant was successfully performed on December 1, 1998. THANK GOD!! I am looking for information regarding TTP, especially any information concerning women who have been able to have children after their initial bout with TTP has gone into remission. I am also interested in hearing from anyone who has had to have a transplant due to the TTP. So anyone out there with any information to offer, please reply. THANK YOU!!

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