Hi I just wanted to say both my brother and I have been diagnosed with a form of this disease. It took YEARS and my brother losing his spleen with no improvement of his platlet count. We have both taken sreroids-harmed our bones ETC from this treatment. We have been to many many Doctors(hemotologists too). In July I was in the hospital for an infection in my colon-it was the 4th holiday and my Dr wasn't around-Of course the Hemotologist in the hospital gave me platlets)to no avail) even tho I tried to tell her about this snydrome I could write pages more but it's great to know there is a support group for this problem!! Jean |
