Hi All-
I am curious to the facts and information on MM and being genetic, running in families, or heretitary...what ever the term.  I have MM and am 6 months post my surgeries with Dr. Steinberg.  Does any one have any info on this?  Is it more likely for MM to be sibling and sibling, or parent and child?  Is it normally that one patient is DX'ed and then for the other to be tested for similar symptoms?  Does anyone have more than two MM patients in one family? Thanks for any information.

Cheri,
        Every thing I have read says it may be genetic, I see people here that have twins with it, or siblings, Also I just found out that a condition I have (klippel-fiel) which is associated to downs-syndrome is also associated to MMD hope this helps

Mike

Hi Cheri,

Although the most recent statistics for a sibling having moya moya is about 10% or less, there is a brother and sister on the board, Michelle and Shane, who both have moya moya. Also, mother and children have reported having moya moya. My brother has moya moya however, I don't and I am older than my brother. I'm not suggesting age really has anything to do with it because it affects infants through adults in their 60's. It is also unknown why MMD shows up in some as an infant and others not until much later in life.

Although not much information exists about moya moya in terms of the possible cause and if it is genetic , most information that is available suggests moya moya may be genetic . I suspect as more moya moya cases are diagnosed, and better technology developed, we will see the true facts about MMD unfold as to whether MMD is genetic or hereditary or both.  I just hope it is in my lifetime.

I hope this is of some value to you.

Lore  

I have heard from my doctor (I think..) that MM is more common to be in siblings than in a parent and child.

When I was first diagnosed, the doctors said it is ABSOLUTELY NOT genetic. I think that is changing since twins seem to get it. I hope they can tell us sooner rather than later :)

- Sara

Hi Cherri,
   My Mother and I have MM. I was diagnosed first then due to my symptoms, which my mother had the same ones she was then diagnosed. I've had surgery she has not. Both my children were checked and do not have it.
Our neurologist says" in our case it is Genetics.
                      Lena
  I was 33 and Mom 53  When we  were diag.

Hi Cheri,

My name is Michelle and my brother, Shane....we both have moyamoya.  We are the "Michelle and Shane" that Lore mentioned earlier in this post.  

As Lore said for this to be genetic is less than 10%.  Dr. Steinberg in CA also told us that he has only seen 4 cases total of genetic related cases...with us being one of them.  It would obviously help a whole lot more if we knew what caused this disease to find out what caused ours and the patterns that we see in both our cases.  One day I hope we will know that and in my lifetime.  We are also very suspect that maybe my dad had it and passed away from that, but we have nothing to prove that.  Had we known, we would have asked for an autopsy when he passed away (12 years ago), but that is of course hindsight now.  

I hope this has helped some.

Michelle