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Playing the Waiting Game While Living with a Rare Disease

Playing the Waiting Game While Living with a Rare Disease

In 2004, at age 17, I was diagnosed with an adult-onset muscle disease called limb-girdle muscular dystrophy type 2B (LGMD2B). My diagnostic journey began 10 months prior, the result of a routine blood test after a car accident which yielded concerning biomarker...
The Power of Storytelling

The Power of Storytelling

In the fall of 2020, in the depths of the pandemic, I attended the Philadelphia Inquirer Telling Your Health Story Conference from the safety of my home. I had volunteered to do the Story Slam at the end of the conference and planned on presenting a piece about caring...

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