Chronic pain reminds me of a bully that picks on kids in the schoolyard every day. Like the bully, chronic pain does not follow any rules and after multiple beatings,…
I believe very strongly in the power of thoughts and words as it relates to my health. I say this because I have lived with a painful chronic neurological movement…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
According to a story from MSN, Joe McCauley was diagnosed with Leigh syndrome, a rare disease, last year. Now 30 years old, he was fortunate to survive a bout of…
This may sound like a strange title so let me explain. I live with a health condition called dystonia, which is a neurological movement disorder. It is the third most…
In 2001, dystonia totally changed my life. I put together a video that shares my 20+ year pictorial journey with dystonia, chronic pain, and overcoming anxiety, depression, and morbid obesity…
The Cure Mito Foundation, a Patient Worthy partner organization, and integrative Cardiovascular Metabolism and Pathophysiology Laboratory (iCaMP) at Boston University, are hosting a virtual conference titled "Empower and Inspire: Understanding…
For months, those within the rare disease community have been watching to see whether Upstaza (eladocagene exuparvovec) would be approved for use within the European Union. In fact, in…
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