When the pain and muscles contractions from my dystonia were at their worst for me (see above), it significantly limited what I could do. For years I characterized dystonia and…
Sometimes… just sometimes, dads get a bad rap. Think about all the mommy blogs out there to empower, to share, and even at times, to vent about the life and…
Welcome back Patient Worthians! This week we have some exciting news for the MS community. Additionally, we have some great tips on how to build your CF dream team. Also,…
Juvenile GM1 Gangliosidosis What is juvenile GM1 gangliosidosis? Juvenile GM1 gangliosidosis is a serious and progressive lysosomal storage disorder (disease) that destroys neurons (nerve cells) in the spinal cord and…
The Chinese musician cradled a guitar, the callused fingers of his left hand flying across frets, and the fingers of his right hand plucking and strumming. But on this Tuesday…
Welcome back to Editor's Choice Patient Worthians! This week, a PW Contributor told a love story about how her husband's bipolar disorder helps her manage her rare disease. We also have an…
El ha sido presentado en el National Geographic Channel. Le ha dado la mano al presidente Obama. Ha sido detenido por el servicio secreto. Incluso después de todo eso, Jason Dunn sigue…
Got the post-Superbowl blues? Then check out these uplifting rare disease stories! One amazing young woman with cystic fibrosis got a sweet shout-out on Super Bowl Sunday, and another older…
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