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Monday Shoutout: Lexi Pappas
Shout out to Youtuber and disability advocate, Lexi Pappas.
When @lexipappas_ was 11 when she started showing symptoms of fascioscapulohumeral muscular dystrophy (FSHD). Her shoulder bone began protruding, resulting in pain and embarrassment. However, her symptoms didn’t come as a surprise as FSHD runs in her family.
For years, Lexi hid the fact that she had FSHD. As the disease took its toll though, she began to open up. In 2014 she went public by starting a blog and last year announced her diagnosis to her Facebook friends on June 20, World FSHD Day.
During her high school and college years, Lexi filmed, edited and published a documentary called “Growing Up With FSHD.” The documentary details what it’s like to be a young adult living with FSHD.
As Lexi continues to navigate her life with FSHD, there will inevitably be more challenges. Regardless of what the future holds, Lexi is determined to keep raising awareness for FSHD, as well as other rare diseases and disabilities.
Follow her on YouTube and Instagram.
Do you have FSHD? If so, how old were you when you were diagnosed?
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