Living with FSHD has good times and bad times. It can be difficult to express what it is like during those times, but over the past few years I have been working on a short documentary that finally tells my story. Not only does it just tell my story, it also tells my mom’s, uncle’s and grandfather’s (who passed away a year ago).
Facing this disability alone is next to impossible; but thankfully for me, I don’t have to do that. Even if you are “alone”, you really aren’t! There are so many groups online where people can communicate about their disabilities. Telling others about your disability can really change your life. Getting positive feedback and encouraging words is what keeps me going everyday. You are never alone, you just have to put yourself out there!
Here is the link to my documentary: https://www.youtube.com/watch?v=VSTgoxlMvUw
I hope you can appreciate our story and that it teaches you something new. All I want is to make a difference and inspire others to do the same. Don’t live life wondering what you could do; go out and do it!!