Roxann McCormick
Sir: while reasearching a project for my computer class I came across your message and was very interested. At age 36 I was also diganoised as having an unusual form of muscular dystrophy which are like your niece's, I am now 58 years old and am no better and only midly worse. The onsets are more often and more frequent and at times uses of arm canes are necessary. I have never heard of the medication you speak of or was never given any information on it. Could you tell me more? I would appreciate any information you have and also would like to know more about your niece's aonset and how it may have changed her life.