We have created this Guestbook to allow our website visitors to ask questions and express their opinions. These comments are a valuable source of information about platelet disorders. We may respond to some of the inquiries when it is appropriate, but we will not respond to most questions or comments. The Guestbook cannot be a source for medical advice; patients must get their medical advice from their doctor.
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|Post 16 - By: Vivian Bissett - Post Date: 6/22/2012|
|I am newly diagnosed. I am wondering if it is possible. Could my TTP be related to Maternal Granmothers' blood disease? She had Hemachromatosis, My Maternal Uncle- Profuria (spelling?) one of my maternal cousins 25 yrs ago-ITP. Is it possible all these are related somehow?
I did not have any diarrhea that MD. states precedes my condition.
|Post 17 - By: Vivian Bissett - Post Date: 6/22/2012|
|I was diagnosed with TTP in March 2012. I went through packed cell transfusions followed by 16 days of platlets phersis. I am interested in some type of support group interaction with other patients who have survived and for me to find ansers to questions. This is the only place I have been able to find that might provide that place for me. However I live in South Carolina and I am unable to travel to group meetings at this time.
Any information you may provide would be greatly appreciated!!!
|Post 18 - By: Marisa Francavilla - Post Date: 6/6/2012|
|I'm from Melbourne Australia.
I have hap TTP from when I was 24 years old.
It's now nearly ten years and I still live in fear of it as I have relapsed every year and three years ago I relapsed twice within months apart.
What scares me most is that when I present myself at the Emergeny Department the doctors look at me as if I don't know what I am talking about.
|Post 19 - By: Viral Kapadia - Post Date: 5/26/2012|
|My cousin was diagnosed for TTP when she was 5 month pregnent. She passed away on 14th May, 2012 after 40 days of treatment. She had undergone more than 25 treatment of Plasmapheresis and 2* 500mg of Rituximab. I have a lot of details and reports to share in case it help some doctors in their study. Pls contact me on my emailid if you need to know more.
|Post 20 - By: M. Wright - Post Date: 4/21/2012|
|I have had low platelets for almost 30 years. I started out with 96,000 and have gradually dropped over the years. I gradually developed a mild macrocytic anemia. I self diagnosed myself as ITP for years but when the anemia became more obvious I worried about MDS. I finally got my first bone marrow when platelet count dropped to 27k. I was diagnosed with low risk MDS. My question is : Have you seen previous cases of ITP evolve into MDS? How often? Might the MDS have evolved from chronic immune stimulation and mutation of rapidly dividing megakaryocytic stem cells? Might I be more or less likely to respond to NPlate or Promacta or vidaza?
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