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      How do you participate in rare disease days? Does it feel like you’re still in a pandemic and bringing awareness to health issues seems uncomfortable or inappropriate at the time?

      I post about what it feels like to be rare or just some valuable hashtags that people can click on and find more information on my social media. I am most appreciative when my family and friends repost information about my rare disease.

      My posts included information on Facioscapulohumeral muscular dystrophy (FSHD). I explained that it is a rare familial disease with an estimated prevalence from 1/8,000 to 1/20,000. It is the third most common form of hereditary myopathy.

      I also added the definition of RARE from the online dictionary in hopes of sparking thoughts and images in followers’ minds.

      /rer/ adjective (of an event, situation, or condition) not occurring very often.

      “A rare genetic disorder.”

      Similar: unusual, uncommon, unfamiliar, out of the ordinary, atypical, singular, remarkable, extraordinary, precious, exceptional, outstanding.

      How does share being rare?

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