sibling with myotonic dystrophy

[lorilwayne]

My name is Lori. I'm 32 and am the sister of someone with myotonic dystrophy. Myotonic dystrophy isn't something is new to our family it has claimed the lives of 2 uncles, 1 cousin, my grandfather, and my father. However I do still feel alone.

My sister myotonia is beginning to progress to the stages that results in death. Is there anyone else out there who is young and has dealt with the decisions that this disease forces you to make at young ages?