Thrombocytopenic Purpura Support Group

TTP is a rare disorder of the blood coagulation system.Thrombocytopenic purpura are purpura associated with a reduction in circulating blood platelets which can result from a variety of causes. There are two known types: Idiopathic thrombocytopenic purpura (ITP) and Thrombotic thrombocytopenic purpura (TTP or Moschcowitz disease). Give advice, share your story, and find support here.

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  • endofmyrope84

    hope i'm welcomed here

    1
    This is the closest thing to which i have. (protein S and C deficiency). i can't find any support groups for this genetic issue due to the rareness of it. kind of funny in a sense. most people in here have an issue with stopping bleeding. mine is the reverse. i'm to coagulant.
  • deleted_user

    Has anyone tried the rituxin and what experiences

    4
    Our daughter is dropping now with her plateletts and her other counts are low as well. This is a chronic situation and we see steroids coming soon. They make her life terrible and we have asked about Rituxin to our Hemo but she is concerned about serum sickness? Our daughter is 12 and has Evans Syndrome which means her antibody's are attacking herself. She take Azathioprine/Plaquenil/Iron...
  • traceysmith

    Getting immune system removed

    2
    I have had Ttp twice this year I'm 48 my doc said the next time Ttp happens they will take my immune system. Has anyone had this done? Does it work ? What other problems do u get?
  • deleted_user

    2nd time with TTP, should I remove spleen?

    3
    I'm currently in my 2nd bout with TTP. My PCP thinks that I should have my spleen removed once my number stablizes. I think this is a stab in the dark since "everything else but my weight, WBC, LDH, and platelets" are fine. I'm hesitant to go through surgery and end up having a 3rd bout with TTP anyway.
  • corpsmanup

    TTP Survivor

    0
    Hi All,I survived a bout of TTP in March 2013. I was just wondering if anyone knew of early signs to watch for that would indicate a relapse. I was on dialysis as well as Plasmapheresis. I have not had a check up since my numbers were back to normal and given the all clear. That was while in Navy bootcamp. Should I be getting checked out regularly?Thank you very much!
  • janea

    Doctors to visit in Miami area

    2
    Hi guys i am from Barbados and i have a friend who suffers from ITP and the doctors here have run out of ideas so she was ask to go overseas to the states. She prefers Miami because she would be able to get housing in that area. Her Platelets keep dropping right now its at its lowest 14. she had bone marrow test done all kinds of blood work to find out what is causing the platelets to drop like...
  • charlotteunicornmoon

    hello

    0
    i was diagnosed with ITP after the birth of my 3rd child which was a c-section, my mum was there & she noticed how white i was getting & that my lips were turning blue, she alerted the midwives who just took one look at me & turned me over on my side, there was blood from nearly head to toe on the bed, i had to have a blood transfusion & stay in hospital for a week, the blood doctor came to see...
  • deleted_user

    TTP relapse, lets talk money

    0
    So my brother has had a relapse of TTP. His first episode was nightmarish as you may have read on my original post. This time he got in after blood in urine with 11k count fortunately no onset of the other bad symptoms. He did inpatient plasmapheresis 7 days strait and then out patient every day so far with a day or two off. He seems to be normalizing but they keep doing him to be sure. Nothing...
  • talon331

    OK, ITP is rareso lets talk about it. I'll start

    I've had chronic ITP for over 9 years. I am a 31 year old man who's had to deal with this disease's ups and downs along with Multiple Sclerosis for years. Neither disease is caused by the other. Both are primary. Any who, my ITP has scared my at times. I usually start worrying when my count starts to take a dive of 15 or better and I usually freak out when it drops below 50 (which has on...
  • deleted_user

    Husband and Wife both have ITP

    4
    Hi there, i was diagnosed almost 6 years ago now when i was 20. 4 years ago i had a splenectomy and have been in remission ever since. My beautiful husband has been with me every step of the way and when at the end of last year he came home from 2 weeks away at work with bruises and a bleeding mouth i sent him straight to the doctor. Turns out it was ITP.... we dont know who was more shocked......
  • Tkhillman

    ITP

    1
    I haven't seen any recent posts here. Been diagnosed since 1985. Done everything. Currently just maintaining. How is everyone else doing?
  • deleted_user

    2nd time with TTP, should I remove spleen?

    1
    I'm currently in my 2nd bout with TTP. My PCP thinks that I should have my spleen removed once my number stablizes. I think this is a stab in the dark since "everything else but my weight, WBC, LDH, and platelets" are fine. I'm hesitant to go through surgery and end up having a 3rd bout with TTP anyway.
  • deleted_user

    What's Next??

    5
    So it will be 1 year next month. An my 9 year old son body is not responding to anything. As of now he is just on IVIG every 3 to 4 wks. His hemo doctor say we will talk about whats next on next month. He say maybe surgery. But i wanna talk to someone who has had their spleen removed.
  • deleted_user

    please help... im really scared

    2
    i was first diagnosed with itp when i was 13. i was taken to th hospital and nearly died, but i was treated with steroids and it cleared up.my healthcare has always been spotty due to parental neglect and as an adult ive never had insurance. i cant see a doctor unless i can convince them im poor/sick enough to deserve it. for a few months ive noticed the petichae come back and im SCARED. last...
  • deleted_user

    Children with ITP.

    4
    My son was diagnosed with an acute case of ITP 3 days before Thanksgiving 2010. He was just about to turn 2 years old. His platelet count was at 15,000 & they did an IVIG treatment that night. We've had our ups and downs with his platelet count. One week they rise, one week they drop. About 4-5 weeks ago, he had his second IVIG treatment. His platelet count was at 230,000 and his doctor said she...