Share Your Story

When so few people have heard of FSHD, it’s especially important to “put a face” to the disease. Telling your story helps others understand how FSHD has affected your life and your family’s life. Celebrate your accomplishments and enjoyment of life while being honest about your daily struggles and anxieties. If you could have 24 hours without FSHD, what would you do? What do you miss most? What has FSHD taught you about life and yourself? What are your hopes and dreams?

There are many ways you can share your story here:

  • Write for our blog and newsletter. Send your ideas to
  • Make a photo documentary by combining photos and captions or short texts.
  • Post a video on YouTube and send the link to so we can add it to the FSH Society’s YouTube Playlist.