I've been miffed at certain friends who don't take it seriously! One of them said, "Oh, yes, my mother thinks she has that." Me: "Really?!? What are her symptoms?" Friend: "Oh, when she exercises a lot, she gets tired."

Another friend thought it just meant you have an eyelid that droops sometimes. Another one said, after I told her there was a drug I was hoping would help me, "Oh, well, you know me--I don't really believe in drugs." And another one asked me to drive to her house twice a day to feed her cats while she took a trip.

I guess it's just because most people haven't heard of the disease. It's so strange--if you tell them you have muscle weakness, they think you're just sort of tired. If you tell them you have trouble holding up your head--then they're really alarmed!