[Needananswer]

Is anyone else frustrated by the language on the myasthenia.org site as well as general web coverage re MG?

The myasthenia site says, "There is no known cure for MG, but there are effective treatments that allow many-but not all-people with MG to lead full lives. Although the treatments will not cure MG, patients may have significant improvement in their muscle weakness" See more at: http://www.myasthenia.org/Livingwith....pbzWjzjy.dpuf

I so appreciate all that the organization does for patients but this language is so misleading and bc MG is obscure I've had many friends call and say, "the website says you can lead a fulll life".

My life w this disease is so far from normal and full that I wonder if this, ultimately, does us a disservice. I know the paragraoh above includes the "not all" caveat and that it is super well intentioned but I'm curious what you guys think? I feel like it marginalizes the effect this disease has on my day to day quality of life.

Maybe I'm just frustrated bc I had to cancel dinner plans bc my eyes are done for the day!