We are ‘step children’ that benefit from ….

April 21, 2010 at 10:00 pm

the research of other conditions.

While we suffer from ‘demelyination’? It is demeyelination of a different part of the body…ergo..we are apples and they are oranges. The processes are SIMILAR? But the effects are equally different yet devastating. Face it? The researchers and the docs JUST DO NOT KNOW! It frustrates me to the nth degree, but that is where we are at in this world.

Be thankful that the MS researchers are doing their thing? Because w/o them? We mite not be any wiser than we were 20 years ago about nerves and their diseases. And also thank diabetics for their advocacy. We are such a small % of the neuro universe that it often takes us years to get diagnosed! [MS demeyelination is in the BRAIN, whereas we’ve got it everywhere else?]

We must appreciate those others with other issues and then learn from them how to go forward about advocacy education and information. The key is INFORMING PHYSICIANS? I don’t have a clue how to do this? But that is a starting point and also a life saving point! For some.

IF there were ‘miracle cures’? They would have found them for all sorts of other critical things? Like the cancers and the other immune diseases we seem to be plagued with? With awareness, and education and an effort to educate our local and regional then national folks about OUR conditions and concerns [i.e. special interest groups] We are among many many groups who approach them….The more the better educated about us? Maybe they won’t overlook ‘details’ in bills and amendments. But they have to have the FACE and the voice of the PERSON presenting anything for us? Because w/o it in their memory? It becomes mush. I’ve lost friends from CIDP and Cancers? I miss these great souls more than one imagines…. But we must go on and do what we can do and should do.

Hugs and hope always!