Hi,

I think I remember you saying your twins were identical… wouldn’t that make them genetically identical? I've read that although the cause of this disease is unknown, researchers suspect a genetic link. It isn’t the norm to run in families like that, but we don’t know enough about this disease to say with any certainty who can get it or who cannot. Anything is possible I suppose, and if the doctor suggests that you be tested, well; it’s better to be safe than sorry. If caught early before any strokes, you can be up and running around with your kids in a no time, even with surgery, with an excellent outcome. BUT, moyamoya is a progressive disease, and the consequences of waiting, if you have it, can be devastating. That’s all of our hopes here, that moyamoya be caught early. All the odds would be on your side no matter how you look at it. Just my and of course, all my prayers.

Mar

Dear twinsmom,

To answer your question, neither of us (my husband or I) have been tested, nor has it been recommended that we be.  Our daughter was diagnosed last May and had her two surgeries in June, at age 17.  Fortunately for us, we caught her disease (advanced though it was) before she had a major "event".

I can only imagine your fears (and completely understand your worries), but Mar is right.  Procrastinating, if you do happen to have MM, really could be inviting disaster.  Worst case scenario:  think about not being there for your kids on an indefinite basis.  Seems like the best thing you could do for your entire family is to face the possibility and find out (my opinion, of course!).  I've always thought that the unknown is far more frightening than the known.

If you read much on this site, you will see that there are a number of people who have relatives or friends who experienced major strokes prior to surgical treatment.  Most of the time the situation was due to the MM not being diagnosed, and it is so sad.  Like Mar said, our hopes lie in the day where early detection is much more commonplace, with catastrophic events not occurring as a result of missed or late diagnosis.

I will add you to my prayers.  Feel free to ask any of us for advice, and we'll be here with shoulders for you to lean on - anytime!  My best wishes to you and your family.

Hugs from California,
Jill

Hello,
I'm 33 and was diagnosed with MM in jan. 2005
My mother is 53 and was just diagnosed a few weeks ago with MM. It could be possible for a parent to have it.
I was told that it was genetic when I was diagnosed,
I didn't  believe it or was in denial about that. But, in my case was proven to me that it does happen.
                take care Lena