30 Days of MD: Filming Movies and MD

30 Days of MD: Filming Movies and MD

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Day 5 of #30daysofMD Introducing Lexi Pappas: I never thought that I could create something that would impact so many people around the world. My whole life, filming movies was my favorite hobby. Whenever I had friends over, our go-to move was to film. I have some of the fondest memories creating these films and then having premieres in front of family members. I also have a form of muscular dystrophy called FSHD and it has impacted my life for the past 13 years, but it has never stopped me from pursuing this hobby that has now turned into my career. In 2013 I decided to combine my love for film and my desire to spread awareness about FSHD. I felt that the best way to do this was to create a documentary about my family and how FSHD has impacted our lives. At the time, there weren’t many videos that depicted a life with FSHD, and how FSHD can affect someone physically and emotionally. It took me a few years to create, but I finally finished in 2016. Not only was I posting this documentary for strangers to see, but also for my many Facebook friends who did not know I had FSHD. I definitely stepped out of my comfort zone for this, but it was one of the best things I ever did. The documentary now has over 40,000 views on YouTube, and I am always getting messages from others, thanking me for making something that they can really relate to. It is the best feeling in the world to know that other people are benefiting from something you have created. That was my purpose. I wanted to make something that would 1, spread awareness and 2, something that people could watch and it would comfort them in knowing that they are not alone. Often times growing up, I felt alone because I did not know anybody else my age with FSHD. Social media and videos have changed everything for me. I connect with so many people with FSHD and have met some pretty amazing people through it all. I am grateful for the FSHD community and the support they have given me. I never thought that I could make an impact, but I went out of my comfort zone and did it. I encourage everyone to take risks and believe in yourself. Never let your disability stop you from doing what you love.

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3 comments

  1. Berta Watson says:

    It would be so very helpful if Oculopharyngeal Muscular Dystrophy (OPMD) would be given some attention in news letters. OPMD does not translate to Old People’s Muscular Dystrophy, even though it does begin later in life.

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