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TTP

Posted , 4 users are following.

valerie93678
valerie93678

I was diagnosed with TTP ( Thrombocytopenic Thrombotic Purpura ) when I was 28 years old. I died twice, was on a plasma exchange machine for a month, had steriods, chemotherapy and in the end a splenectomy, by the way none of those treatments cured me. Went onto use hemoglobin which is what cured me. I'me now about to celebrate my 50th birthday and feel

So lucky to be alive as at the time there was only 4 people in the country who had this desease, 1 died, 1 ended up in a wheelchair and the other 2 survived. Please tell me if anybody else has had this as I still dont know where it came from or what it is. Thankyou.

0 likes, 3 replies

3 Replies

  • johnhopps
    johnhopps valerie93678

    Posted

    I'm on this as a cerebral venous sinus thrombosis brain hemorrhage survivor . Congrats on your 22 years since.
  • debbie90350
    debbie90350 valerie93678

    Posted

    I have also been diagnosed with TTP, in October 2014. I also had plasma exchange and steroids. I was in intensive care for  about 10 days. I am very lucky to be alive as the condition is so rare it does'nt get picked up straight away. There is a group to join via facebook called TTP Network, and a diary in the life of a TTP Patient, lots of other peoples stories etc
  • wendy92629
    wendy92629 valerie93678

    Posted

    Hi Valeria, According to my late mother I suffered from this 55years ago. I am unable to find anything to prove this as my GP only has henoch schonlein purpura on my file. I was in hospital for many months though. She was insistent I had this. I don't know that much about it except they say its part of the group of three associated diseases. I'd be interested to learn much more
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