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 186 - 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
|Post 187 - By: Diane - Post Date: 4/15/2009|
|Has Vaniqa (facial hair remover) ever been linked to HUS/TTP?
|Post 188 - By: Jenny Gibson - Post Date: 4/9/2009|
|Thank you for your efforts. This information is very helpful.
|Post 189 - By: Connie Shively - Post Date: 4/8/2009|
|After my 3rd TTP relapse in 2006, my hemotologist tested me for ADAMSTS-13, and found that this was more than likely the cause. After 33 exchanges between 9/1/06 and 11/27/06 I was started on Rituxan, 4 treatments over 4 weeks. This worked great for me.
|Post 190 - By: dee - Post Date: 4/2/2009|
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