Tuesday, May 26, 2009

We need a Michael J. Fox. There, I said it. I am sort of ashamed of even thinking or seeming to "hope" that someone famous gets this horrific disorder called Myasthenia Gravis -- but, then I look at what Michael J. Fox has done for Parkinson's. Is MG as "bad" as Parkinson's?? It can be -- sometimes it is worse. We have several members who are on a first name basis with their wheelchairs/powerscooters. There are MGers who are hooked to ventilators. One of my dear friends lost the use of her voice (not in the normal MG way) -- but, because she was on a ventilator for so long due to respiratory crisis. She almost died several times -- and now, she has a battery-operated talking "thingy" that she holds to her throat.

MG is rare -- there are different statistics -- I could quote them for you -- but, what is the point? Most doctors (general practitioners) may only encounter one or two MGers during their lifetime of practice. Even general neuros do not see it regularly. Since we are rare, it is not "cost effective" for pharmaceutical companies to develop drugs specifically for us. *sigh* There was one that we were all keeping an eye on -- Monarsen. It was being developed in Israel -- and it looked like it would do an even better job than our Mestinon. But, it was bought by another pharmaceutical company -- and apparently, they decided that there weren't enough MGers to make further development of the drug worthwhile. BIG *sigh*

Do ya know anybody famous with a droopy eyelid or double vision??

1 comment:

  1. www.mgawpa.org/library/famous.htm
    lists famous folks
    I've had this disease since 1960 and have
    always thought we needed someone famous
    to champion the cause..