Hi Almirati,

Welcome to our MM family.

I’m so sorry for your loss. That’s a pain I can’t even imagine. God love ya!

I wish I had some definitive answers for you, but all I can tell you is what we know thus far about this disease, and that is… 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. There appears to be a genetic link, thought to having hereditary tendencies and having genetic factors in its pathogenesis, but I've not seen any information, which assigns a specific risk level to passing this along to your children. The conventional wisdom seems to be to watch them for symptoms. Staring seizures is definitely a sign that would merit testing, but with a doctor who has MM experience that would best know the correct path for that particular case.

This is definitely a treatable disease, with an excellent long-term outlook, but the key to that success is getting a doctor with MM experience, preferably a MM expert. There is such a huge lack of knowledge and understanding about this disease throughout most of the medical profession, but there is help out there.

I wish I had more information for you, but unfortunately the researchers don’t have any supported facts yet for this rare disease.

My thoughts and prayers are with you and your family.

Mar

My brother and I have MMD, but our sister does not. My brother's children do not have MMD, nor does anyone else in the family, at least those that have had MRIs. The University of Texas was doing some research on a genetic component of MMD, of which my brother and I were a part of, but I haven't been contacted by them in over a year, after I gave them a DNA test.