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

I had surgery done when I was 17 and I can only say it was a very scary time for me.
I don't know what her symptoms are, for me it was being tired all the time, slurred speech and major headaches.
I don't really remember talking about it with my parents as I felt terrible and really didn't know what to say about it.
She is ill, but also a teenager and teenagers do tend to want to keep things to themselves.
I don't know if she has many friends who support her, perhaps she talks to them about it.

What you could do is let her know you are concerned about her. Tell her, and tell her you feel.
It is scary but any form of change in what she feels needs to be told to a doctor.
This is a serious disease but treatment is  available and your daughter should be aware of that. However she is not alone.
Many people have gone through what she is going through. And everybody on this message board supports her, I am sure about that.

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

Hi,, just wanted to check in and let you know we were able to visit Dr Khan. She has been great. Unfortunately our daughter does need surgery; it is scheduled for Nov. Hope everyone prays for her and that everything is successful! Oh,, and she still won't talk much about it,, but seems to be dealing OK with it; as good as can be expected at least.

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.

yes, Dr Khan is great. Tomorrow is the big day,,, I think I am more nervous than my daughter. She has been one tuff cookie this whole time. So proud of her.

any updates?