Re: MORE 5th Union - Machado-Joseph's Disease

"More from my mother: Kat

HI Guys!

Marie Boutte - her last name is pronounced (boo-tay) and I have been corresponding for a couple of years, periodically on Machado-Joseph's Disease - MJD for short. This is the first time that we have met and she is a lovely woman, very intelligent, a teacher able to explain things so that they are easy to understand, caring and careful, a researcher who travels all over the world!! I told her I would love to have her job!! :-)

She and I discussed the need to note that THERE ARE NO MELUNGEON DISEASES since such things can be stigmatizing to any group. Some illnesses are familial and/or inherited and therefore come in clusters but we can not identify a disease with a group, a nation, or a people.

At 10:30 am June 17, 2004, Marie gave a talk to a full room on Machado-Joseph's Disease.

MJD is a rare illness. To date Marie said that she had not identified this illness in any Melungeon family and she was researching in order to do so or eliminate this illness. It would be very important if any of you know of families who have been diagnosed or who have the symptoms to get in touch with her and you can do so from a link on my health page url. The following are from my notes. I was getting tired by this time so I hope I am not getting something wrong here. Will correct this later if I do.

In the mid 1980s a black family from North Carolina whose last name was Joseph were diagnosed as having MJD. Back in the 1970s a family of Portuguese in New England and later in CA and whose name was Machado were also diagnosed with MJD.

The CA family never talked about the disease outside of the family. It was considered the 'family secret.' But in the early 70s many neic"