Limb girdle muscular dystrophy - anyone?

[RunAwayNow]

Have nc'd for this.

Just wondered if anyone has experience of LGMD. My 4yo DD has just been diagnosed following genetic testing. I know a prognosis is impossible but am really keen to hear of other people's experiences.

For rare genetic disorder, you need to go very specific, and Facebook is your best shot. You must look for groups and they will be able to direct you towards the best resources.
For example , on this group www.facebook.com/LGMD.1D/ , I found a link to this blog lgmd1d.org/lgmdwp/

You have been pushed into the unknown and it is very scary at first, but you will soon found out, that the genetic disorders community is very helpful.
Best of luck