Telling Facebook about my disability.

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On June 20, 2016 I told my friends on Facebook about my disability for the first time. Here is what I wrote:

In honor of today being World FSHD Day, I want to spread awareness about a huge part of my life. Most of you don’t know this but I have Facioscapulohumeral Dystrophy (FSHD), a form of muscular dystrophy. It’s affected my life now for about 10 years. My muscles are deteriorating and I can no longer do most of the things I could do as a child. From seeing my pictures, you probably can’t tell that I have a disability. For the past 10 years I’ve tried to hide my disease. I was embarrassed because I thought people would view me differently.

These 4 scars are from my surgery I got to permanently connect my shoulder blades to my rib cage. With FSHD, the muscles that are supposed to support your shoulder blades, are not there. This caused my shoulder blades to stick out. It was one of the main reasons I tried to hide my disability. I would never wear any shirts that would show my back. But now I feel like a new person. I can finally wear those shirts and dresses. It may not seem like a big deal, but to me it’s everything I’ve been waiting for.

I may be stuck with this disability for the rest of my life, but I’m not going to let it control my life. Rather than focusing on what I can’t do, I like to focus on what I can do. I can raise awareness about the disease, I can get support from friends and family, I can find new ways to strengthen my body and I can push through everything and come out stronger than before. I believe this disability has made me a better person.

I know what it’s like to feel different; I want to help other people who feel the same way. While at Bryant I competed in a public speaking competition. Below is the link for the video; watch it to find out more about my life with FSHD: https://www.youtube.com/watch?v=C8qyAHqydGs

Since it is World FSHD Day, here is the link to the site where you can contribute by donating money to the FSH Society, so hopefully, one day we can find a cure:  https://www.fshsociety.org/make-gift/

 

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2 thoughts on “Telling Facebook about my disability.

  1. Suffering the consequences, nowadays I feel speechless. I wish I did not have parents, I would kill myself.

    • I know it’s hard living with a disability like this, but there are so many other things in life that can make you happy! you have to find your passion and run with it. If you need to talk to people, join the Facebook groups like, “Living with FSHD”. There are so many great people to talk to on there.

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