Hi everyone - just wondering if anyone caught the show the other day on TLC - it was about a girl who was a primordial dwarf and also had moyamoya on both sides.  My kids saw it and were surprise to hear it on tv, I fell asleep so didn't catch the show.  But hey - it is out there!   :)

i caught the show .. was good but only a short segment on moya moya ....but any exposure to moya moya is good

              heather

I did not see the show either, but Heather is right, any exposure for Moya Moya is positive.

We live in a small town in Nebraska and Moya Moya was never heard of around here.  After my daughter was diagnosed with the disease, the local school sent out information to all the students so they would have an idea about what Josie was going through.  Also the local doctors said they would always remember this disorder and be on the watch for others who might be suffereing from it.

Any information on Moya Moya for our communities is good and important.

i watched that show, i love shows on the tlc channel, i was surprised i asked my husband if that was what they said, and it was, i couldn't believe it was on a tv show. great exposure though getting the name and disease out there is great,

Hey lflores,

I have been lurking on the board for the past month, as my DH was just diagnosed.  I saw your post and realized that we are both from Addison, IL.  I'm off Army Trail Rd. near the high school.  How weird!?!?!

Another Shari!  That makes 3 Shari's I have known!

Anyway, I saw the show too.  Apparently there is a strong association with primordial dwarfism and MM.

-Shari