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 101 - By: James Bluey - Post Date: 6/28/2010|
|I'm accually undergoing treatment for TTP as I type this. I was hospitalized for 25 days, had 3 strokes, and at least 2 seizures. but I've been on outpatient pheresis for 2 full weeks now and my numbers have stablized in a normal range (177000). I've started a taper on my prednisone. thats my news for today :-)
|Post 102 - By: Mark - Post Date: 6/16/2010|
|Are there ANY immunoadsorption protein A products available in the United States for treatment of Hemolytic-Uremic Syndrome?
|Post 103 - By: Irma Gosserand - Post Date: 6/7/2010|
|I was diagnost with TTP over 10 yeasrs a go I have relapsed I think now about 7 times , my pl. count has gone as low as 4. I know I am a walking mirical. as of today I have been good for about 5 years fgoing on 6.
|Post 104 - By: Dr. George - Post Date: 5/20/2010|
|It is hard for me to say anything useful about this dilemma because I have no experience, except to say that I can understand the problem very clearly. This is not a diagnostic issue for us because malaria occurs very rarely in our region. I assume that in regions where malaria is endemic, such as sub-Saharan Africa, that the initial diagnosis would always be malaria, since TTP is very rare in any region, with an incidence of only 1-4 per million population per year. Also the treatment for TTP (plasma exchange) is complex, probably not readily available in most areas where malaria is endemic, and even when it is available, plasma exchange is associated with a high risk of major complications; in our experience, complications of plasma exchange caused death in 3% of patients.
ADAMTS13 assays are also not readily available anywhere in the world, and TTP can occur with normal ADAMTS13 activity and other diseases (maybe even malaria?) may be associated with low ADAMTS13 activity. So this is not a specific diagnostic test and should not be used to make the decision to treat or not to treat with plasma exchange.
I think my suggestion would be to consider plasma exchange treatment for possible TTP only in patients who fail to respond to treatment for malaria and in whom no diagnosis other than TTP is discovered.
|Post 105 - By: Wanda - Post Date: 5/18/2010|
|Hope there is a cure soon ..plasma exchange is very hard on me..thanks for your website!
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