Hi.  I'm Julia.  I'm married to a MoyaMoya survivor.  He had his surgeries when he was 8 years old, and now he is almost 20 years old.  We have 2 kids together.  Our daughter is 2 years old and our son is 8 months old.  I just stumbled across this site, which seems to be very informative.  Does anyone know if I should worry about our kids?  Also should I be worried about my husband at all?  Is there anything that I should watch out for?

Hi Julia,  [smiley=wave.gif] Welcome to our MM family!

I wouldn’t say you need to worry, but I’d definitely keep an eye out for any symptoms with your children and definitely tell their pediatrician/family physician that their father has MMD so they won’t take the slightest symptom too lightly. Many in the medical community are not experienced enough with this rare disease, so it’s important that you stay on top of it and learn all you can about the disease, so no one can steer you in the wrong direction should God forbid, you suspect any symptoms. The cause of MM is unknown, but because it tends to run in families, researchers think that MMD may be the result of inherited genetic abnormalities, so it’s just something to watch out for. I’d arm yourself with knowledge to be safe. It saves lives.

I don’t know your husbands specifics, but if his surgeries were successful, generally speaking, a MM patient has an excellent outlook. Every MM case is different though because of the many individual factors involved. If he would show any MM symptoms such as, TIA’s, seizures, speech or cognitive impairments, headaches, etc, then a MM experienced medical staff should check him immediately.

This website has a wealth of information to learn from and many good people who will help you in any way they can. Please don't hesitate to ask.

Mar

Thank you very much.  I have been watching our 2 young children, but to be honest just don't know what to look for.  They both seem like normal active children so far, but I know that that can change in an instant.  My husband started showing signs at around 4-5 years old, so I don't know if something can happen at that age to our little ones.

I will be looking up all that I can on this disease though now that it is most likely genetic.  It was thought to just be random when my husband was younger, but now with all the new research I'm kind of scared.  My husband has not had any signs of the MM since he was about 10 years old, and he is now 20 years old.  I'm very glad that his 2 bypass surgeries were successful at the hospital in Boston.  He is basically a healthy guy with a steady fulltime job and who loves his XBOX 360.  LOL!   ::)

Hello,

Hello,

Having problems with this reply sorry.
One specific symptom is numbness in the limbs after hyperventilation. eg. crying or blowing up balloons. I had these symptoms when I was pre-school age. I also have had  chronic migraine headaches as far back as I can remember. This seems to be a common experience if you read through the posts on this website. I had my 1st stroke at age 40 and had indirect bypass surgery in Oct. 2000. Hope all goes well with your family.

Russ