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Recent Entries

Post 41 - By: elizabeth grissom - Post Date: 12/28/2011
my daughter nikki is in doc georges study group ,,,nikki does well at times she is always in pain,,,stomache problems and major headaches,,,,she gets weak,,,and sometimes she rabbles and cant remember things,,,i know that this is part of her TTP,,,,she refuses to give in,,
Post 42 - By: elizabeth Schwartz - Post Date: 12/24/2011
As a person with del20q myelodysplastic syndrome, and platelet counts below 50K for a year now, I am obsessed with learning about platelets. Will you be including my platelet disorder in your studies in the ner future, also?
Post 43 - By: Leslie Amsberry - Post Date: 11/16/2011
thank you for this very informative website. I was diagnosed with TTP in 1995, treated at a Kaiser facility in California. 39 plasma exchanges, Steroids and vincristine knocked it down over a 6 month period and never returned, until January, 2011. I recognized the symptoms and went to the ER immediately, spent two weeks in the hospital, received 6 plasma exchanges, steroids again, but counts went up and held, so I was released. I get my blood checked every 3-4 weeks now, and feel very lucky that the relapse, after 15 years, was mild in comparison to the first episode. I feel great now, but get occasional headaches that can last a couple of days, even though all blood counts are normal. That seems to be the only affect I am aware of, other than the thought that TTP can return. D you have any information on flu shots and TTP? I don't want to upset what appears to be working, as i take no medications of any kind, but some material suggests a relapse can occur following the flu. Is the vaccine to prevent the flu a greater risk than actually getting the flu for someone like me?
Post 44 - By: Kris - Post Date: 10/29/2011
I contracted TTP HUV when i was 8. Blood in my urine, renal failure diseased spleen, coma and seizures, severe headache, Severe anemia etc. My recovery post the splenectomy was rapid.This was in 1961. In 2008 just before my 54th birthday i had a heart attack and received a stent.Which almost certainly is TTP HUS related. In October this year (2011) i was diagnosed with 35% use of my kidneys. Down 15% in three years from 50% in 2008. I am taking BP and Cholesterol medication and Ecotrin a high dose of aspirin to thin my blood. I live/lived a healthy physically active life, but am under siege at the moment. I have been given, by a renal physician, 8 to 12 years before my health (kidney related) will be seriously compromised.I have recently been placed on a diet low in potassium and cholesterol friendly. Even so I feel afraid.Being so young at the time I didnt register how seriously ill i was and that there would be repercussions later in my life. My parents divorced about a year after my TTP/HUS and i guess it and whatever pointers doctors had given were lost in the aftermath of their break up. Looking back over my life I can see that i have always had memory problems and difficulty concentrating. And have been knocked over by flu episodes. Where other people can work and be active, flu takes me to bed. It persists. Every 5 years i have a pneumonia vaccination.If any TTP HUS recoverees have any tips i would be glad to receive them. Thank you for this forum. Kris, Cape Town, South Africa
Post 45 - By: Trish - Post Date: 10/18/2011
Thanx 4 site..I,a nurse, looking to up my platelet count due to chemo=reduction count of 66! wondered what could be ingested/supp to help..saw what can be avoided only.

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