We would love to add your story to our collection published on our website. If you would be willing to share your thoughts, frustrations, experiences, email it to us at fshfriends@fshfriends.org with your name. The following details would also be helpful:
 |
How old were you when you realized that you had FSHD? |
|
|
Do others in your family have it or was your case new? |
|
|
Do you take any special vitamins or tried different therapies? |
|
|
Do you go on any chat rooms? If so, feel free to share our need for personal stories and pictures. |
|
|
Any other stories about yourself would be nice to have as we build our website and tell others about life with FSHD. |
|
|
If you have any pictures of yourself that you would be willing to have published on our website, please send them as well. We would prefer to use pictures of real people that have FSHD and their families rather than "models." |
Thankyou!