Hi everyone

Just wanted to let people know that medical personnel are starting to learn about moya moya disease.  A friend of mine is a nurse in the stroke clinic at our local hospital.  She recently went to a seminar in Hamilton Ontario on "Strokes in Young People".  Believe it or not moya moya disease was discussed in the seminar as one of the conditions that can cause a stroke.  She told me she was quite surprised because the only case she's even heard of is mine.  I think it's great.  Now a few hundred more people in the world know what it is.  Hopefully it's something they will continue to educate the medical field about.

Debbie

Great news!  Thanks for sharing!  ;;D

Amen, i felt so scared when imy nurses would ask me, the patient, "what is moya moya?" i would be like "i dont know you're the nurse you tell me."  :-[

I agree when I go to the ER for pain. They always say what is moyamoya, what is it about, what does it do? I agree, "your the dr or the nurse you tell me!" It's very frustrating to have them say let me go read about it. And they go read about it on the internet. They basically say what do you want? What kind of pain meds do you want? So I am basically telling them what to give me for the pain. I would love to walk in and the nurse or dr. to say yes I knoe what it is and here, this medication will work. Lets get the work out! I explain all I know to everyone I know! I give out moyamoya braclets to ALL my family members and they wear them ever day, even the little kids. So lets talk to everyone about it. We can also help get the word out! Much love to EVERYONE on this site.xoxo

Yes, the word is getting out. I had a TIA in March and seen my neurologist at the University of Iowa this week. They are doing a study of MM and asked if I wanted to do it. I jumped at the chance.The University of Washington in St.Louis is also involed. It is a five year study of the blood flow to the brain. When I had my TIA the local doctors still had no idea what mm was and I had been in two years ago for the same thing. Just wanted to put my 2cents worth in.

Take care, Sharon

When my mom was admitted to the hospital.... nurses would search on the internet to see what moyamoya was. How can you treat a condition you know nothing about? Yes they do need to be educated.

Mine was detected by a nuroradiologist who just got back from a seminar that taked about how to detect MM. My nuroloest at the time(I have a diffrent one now) Looked at the same films and said it was impossible since i am not Asian. I asked for a second opinion there and never went back to that nurologist. My second opinion was from the Mayo clinic in MN and the nurologist looked at the same film and didn't look at my history and said MM. He later looked at everything and I had my surgey 2 months later (I was on Coumindan so i had to wait, he wanted to have it right away but you cant be on coumidan and have surgery).
It is great to here they are talking about it!!!!
Becky