has anyone ever heard of moya moya affecting the lungs, kidneys, heart etc.  A friend of ours child has had the brain surgery and it proved successful but now they have been told that it is starting to affect her organs as well.
has anyone else had this happen

Really?  I've never heard of that.  What doctor is your friend's child seeing??

-Shari

Moyamoya disease is a rare disorder of the blood vessels of the brain. (cerebrovascular disease/disorder.) Yes, there can be other problems/disorders associated with this disease, but that varies on an individual basis.  MMD cannot be in other organs though, if that’s what you mean. Depending on each individuals clinical condition, I would imagine that the lack of proper blood, oxygen and nutrients the brain needs, could affect a lot of things, but I'm not sure exactly how the statement, "it's starting to effect her other organs as well" is meant?

Mar

I think that maybe they mean that arteries leading to other organs may be narrow/occluded.  

Our daughter, Daphne, for example had a heart defect that was similar in pathology to her moyamoya disease... Her aortic arch was narrowed and thickened inside for a pretty long streatch.  I've heard this heart defect (coarctation of the aorta) has been associated with moya moya.

Mar is right that Moyamoya disease is limited to the brain, but whatever pathology that caused the moyamoya disease might affect the arteries/veins that lead to other organs as well.

Why do the doctors think her other organs may be affected?  Have they done any studies of her other blood vessells?

Good luck... I hope your friend's child is OK.

Jenny

I'm new to MM,  but I've never heard of it affecting other parts of your body other than your brain.  However, my neuro  did mention that I, personally, may have other "vasular" issues since I do have MM.  

Please keep us updated...

Take care,
SFH

thanks I think what you said makes more sense. The vascular part is probably affecting her other organs.  
Hopefully they will be able to help her and treat her other problems before they advance.
thanks for replying

For the new members seeking answers to this unusual rare disease, IMO, we must be careful not to give the wong impression, and also state the facts as we know them, and that is, that the cause and pathology of MMD is unknown. There may be several disorders/diseases in association with MM, but MM itself may not be the cause of them. There’s no doubt the associated problems may be relevant to MMD, but it is not proven that MMD itself causes them or that MMD itself affects other organs. The presentation of several disorders does however suggest a possible hereditary, congenital component. MM and it’s functional effects on the body are in study and research, so a long list of other possible underlying conditions could also be the cause as well, and not necessarily MM.

Sure, as Jenny and Nancy mentioned, heart defect, high blood pressure, as well as others, such as renal artery lesions, Down’s syndrome, etc may be associated with MMD, but they also could very well have a hereditary component to the cause as well, and not necessarily from MMD itself. MMD varies in each individual, and is a cerebrovascular disease.

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Mar