Playing the Waiting Game While Living with a Rare Disease
Society for Participatory Medicine
MARCH 1, 2022
In 2004, at age 17, I was diagnosed with an adult-onset muscle disease called limb-girdle muscular dystrophy type 2B (LGMD2B). I had no physical symptoms and felt like I was in perfect health, so to hear I had an underlying disease was baffling. Social media, for all its drawbacks, serves its purpose well in this regard.
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