Reschlinghausen disease

Posted By Bela on January 13, 1999 at 13:49:47:







This may be a new topic. My 15-year-old nephew was diagnosed with Reschlinghausen disease just a week ago. He had already had a brain surgery to remove a tumor at the age of 3, and eye surgery a while later, his right eye lid is hanging down over his eye without being able to lift it to open. last summer, he had a surgery to remove some more tumors from close to his lungs along some nerve cords. During the process, the cords were affected preventing him from having full mobility in his left hand. And last week, it was confirmed that he has numerous more tumors in all over his body. Reschlinghausen disease is said to be a very rare disease where tumors grow along the nerveous system (?). In Hungary, where hi lives, his family has no information on this disease, thus we would like to know exactly what we(and especially my nephew) is facing. Is there a clinic in the US specialising in the treatment of this disease? Is there a hope that these tumors will not grow and new ones will not appear?
Thank you for your reply in advance.
Bela