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Member Spotlight/What Makes Me Rare
“Hi, my name is Danielle Liptak, and I have a rare disease called facioscapulohumeral muscular dystrophy. It gets its name from muscles that are affected in the face (facio), around the shoulder blades (scapulo), and in the upper arms (humeral). Unfortunately, this disorder also affects walking and the leg muscles causing many patients to use mobility walking aids to get around. I use a powerchair outside of my home and a walker inside my house. Facioscapulohumeral muscular dystrophy is one of the most common forms of muscular dystrophy affecting 500,000 people worldwide. It affects men and women equally. What makes me rare is my ability to adapt to most situations. There was a time in my life when I allowed this disease to have control of the best parts of me.
With help from family friends and therapy along with medications and doing my best to take care of the muscles I have left, I can love the life I have even with fewer muscles than before. The thing about being rare is that there was a time I knew no one with the same disease as me. I wasn’t able to get on Facebook and message a support group. I’m adopted from Santiago, Chile as a baby. My parents don’t have FSHD and tried to wrap their heads around what a future would like for me. Now I do not feel alone with a rare disease. If a question or concern pops into my head, I know it has crossed the minds of my fellow FSHD family. Being rare is no longer scary, and I don’t try and hide myself or make myself fit in anymore. Instead, I put a lot of effort into making the world inclusive for everyone, rare or not.”
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