Having lived for over 20 years with chronic pain and persistent involuntary muscle contractions from dystonia, a neurological movement disorder, I have experienced a lot of suffering. If you have read…
Kelly Heger, founder of the AADC Family Network, shares her story of becoming a nurse to take care of her daughter with AADC deficiency. When my daughter, Jillian, was born…
Jeremy Schreifels was just a young child when he was first diagnosed with Tourette syndrome, a nervous system disorder characterized by sudden, involuntary movements or vocalizations (“tics”). In Jeremy’s case,…
Having lived over 20 years with chronic pain from dystonia (a neurological movement disorder) in order to best manage my condition, I have to be very mindful of the way I live…
The journey to a rare disease diagnosis can be long and daunting - and, in some cases, may mean facing a few misdiagnoses first. According to KTVB7, this is what…
It’s finally May – and you know what that means! That’s right, this month is Huntington’s disease (HD) Awareness Month. The theme for this month’s HD Awareness Month is #LetsTalkAboutHD.…
Katheron Intson is a passionate scientist; she likes understanding how and why things work the way that they do. So when Katheron’s friend reached out about a mysterious health problem,…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
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