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 171 - By: Michele Heslop - Post Date: 5/20/2009|
|I live in atlanta ga, and my nine year old son was born with cogential thrombocytopenia.His platelets stay between 25 and 30 thousand. Do you have any info on Cogential Thrombocytopenia?
|Post 172 - By: Joanna Cole - Post Date: 5/13/2009|
|Diagnosed with ITP 2/4/2009. Had 3 rounds of Dexamethazone, ivIG. Most recently had 4 weekly infusions of Rituxamab. Exhausted but appear to be in remission.
|Post 173 - By: Jim - Post Date: 5/6/2009|
|I am a 44 y/o man that was diagnosed with TTP 2 yrs ago. So far, my blood levels have been great. I did have 100 plasma exchanges and numerous blood transfusions during my 4 month stay in the hospital. I exhibited all the symptoms and went through all the tests and procedures (splenectomy, chemo drugs, etc). I am thankful for my doctor and the hospital for knowing right away what I had and taking great care of me....I would like to help all that have any questions that I can answer or just to hear others with their stories....
|Post 174 - By: pikapal - Post Date: 5/1/2009|
|thanks for this guide. It really helped me in my school project. ^.^
|Post 175 - By: Christy - Post Date: 4/30/2009|
|I am a research nurse with a friend who has been dx w/ TTP within the last 2 weeks (today is 4-21-09). From my short review of info from various sources, I'm finding it important to encourage his family to inquire about ADAMTS13 deficiency asap to get prediction for relapse... He is receiving plasmophoresis and this week has been started on chemo. He does not have previous comorbitities that I know of. I realize that you cannot give medical advice. But from info about the support group, I'm wondering if there may be someone who you know as a patient or patient's family who would be a good and willing resource for my friend's wife to contact. She is very level headed and intuitive to his current conditions. He is currently in this strange awake/asleep state, combative but they allow him to be in a chair with restraints. He is able to chew ice which seems to be a very voluntary movement as opposed to just swallowing it which would be more involuntary. He started off in the first week at least able to grunt the words I love you more to his wife. At this point he did grunt the word hi after it being said to him repetively. Any info/suggestions you may have will be appreciated. For 10 years I managed an ortho-oncology clinic in which I had a few patients who were willing to be resources for newly diagnosed patients. Not sure if you have any one like that for my friends. Thank you for all of your work! Without research today, we cannot help the future. Sincerely, Christy Hagewood
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