hi My name is acacia and I have had moya moya since 1985 and wonder if any one wants or can share there experience with me? Good or Bad.

Hi Acacia, I was diagnosed back in 1986 due to stroke and severe reocurring TIA and had two EDAS surgeries later in the year. I had one stroke following the surgeries in 89 and was symptom free until 2007 when I was diagnosed with epilipsy and was just last month (07/2011) diagnosed with stenosis of the left subclavia, which they are assuming is progression of the Moya Moya disease, scary part of that is when I become too active it causes blindness and chest pain due to steal syndrome. This site has been amazing and I've learned alot in the few short weeks since I found it, nothing like what was availble back in the 80's.

I was 7 years old when I had my surgeries and aside from the bumps in the past couple of years I've had a smooth ride, I take topomax for epilepsy and a combo of drugs for hypertension which runs in my family.