Hi All,

our 16 year old daughter Sami was recently diagnosed with Moyamoya. Obviously we are very concerned as I am sure everyone is when they find out that a family member has this. I do have a few questions I hope someone can help us with.

Does anyone have experience with specific Doctors in Germany? Her current doctor is not a specialist and we really want to go to someone with experience. The current doctor doesn't believe it is serious yet and she only needs to be checked once a year, but would rather hear that from someone who knows the disease and has experience treating it. 

Also,, any ideas / suggestions on how to  talk to our daughter about it. It's been almost a year since she was diagnosed and refuses to discuss how she feels / what she is thinking,, We know she is scared and trying to ignore it,, but I don't think it's good for her to not discuss it with us or maybe with other kids who have already had an operation?

Finally,, I saw there is a conference in Zurich, Switzerland for Moyamoya. Does anyone know if this is only for Doctors or also families? I can't seem to find anything on the website which states if families are invited . I also emailed them but have not yet received an answer.

Thanks for the time and website! It's great to know there is somewhere we can go to find out more,,

Scott / Simone

Hi Scott / Simone,
You can Contact Dr. Nadia Khan, in Zurich. She is a Moyamoya specialist and colaborates with Dr. SteinBerg here at Standford Hospitals, USA. We had interacted with her and she knew what she was talking..
She responds to emails. If you can find someone going to the conference, you can also hand over the MRI CD/ reports (Images will be better)  so that Dr. Khan can gloss over them.

Good luck with everything.
Amit

Dr. Khan is a class act, and I'm glad you were able to talk with her then schedule surgery.  Will be thinking of you.

any updates?