Posted by Melinda Hall on February 21, 2003 at 02:52:19:
Hi! First of all, let me say thanks for putting this together. Some of us have been looking for info for years!
My aunt started getting sick in the mid-1960s. She complained of headaches and hearing loss. Over about 20 years, she got several diagnoses. One place early on even diagonosed her with schizophrenia and performed electric shock therapy. In the mid 1970s, she had a couple major strokes that left her paralyzed on the right side of her body and she was then in a wheel chair. By 1984, she'd had another 2 or 3 strokes, and that's when she finally got the diagnosis of moya moya. By then, she was completely bedridden, couldn't communicate, and her body had curled up. There was a little information about the program at Stanford back then, but she was too far gone for treatment. My grandparents cared for her at home almost the entire 30 yrs she was sick--up until she passed away from respiratory complications in July 2001.
Again, I want to thank you for putting this together and providing your own personal experience. Every so often I get a little anxious at the headaches I get and bother my own doctor about it. Now I have information I can print out to show him what this condition actually is and why I worry about it being in our genes.