Bethlem Myopathy / Ullrich Muscular Dystrophy

[sleemiller]

My son is 2 and was officially diagonosed with Bethlem Myopathy yesterday. I would love to talk to you!

Hi wewillsurvive,
please email me leemillers@comcast.net. We have a yahoogroup for Ullrich/Bethlem & there are other groups as well that will be of help. Looking forward to hearing from you.
Susan

[Tina Kennes]

Hello everyone,
I am a 32 year old woman diagnosed with Bethlem Myopathy. As I have a daughter of almost 5 months old, I really understand all the questionmarks you may have concerning raising a baby with Bethlem or Ulrich.
I can only say that life might be hard sometimes when you have it, but I believe everyone has his problem to live with and to me it isn't the end of the world... whatever I have found on my path through life, I have overcome and I am sure your little ones will do the same.

If you want to talk about my experience with BM and my tips or tricks, please let me know, I will also join the yahoo "Ulrich" group.

Regards, Tina