Happy November! This is one of my favorite times of the year with the clean, crisp air and the leaves changing color. However, I am not a fan of the shorter…
Happy Friday! We have some great news for the short bowel syndrome community. We also have info on a PBS doc you won't want to miss. One of our contributors…
I know many people who would love to go to a local support group, but there either isn’t one in your area or you are not well enough to attend.…
Klippel-Feil Syndrome Awareness Day began five years ago, when a small group of people decided a specific day each year should be set aside, to help the KFS community speak…
Welcome to Friday Patient Worthians! This week we have stories on cystinosis and super moms with sickle cell! Additionally, we have a patient story on dystonia and an upcoming event. Lastly, an…
Pantothenate Kinase-associated Neurodegeneration (PKAN)What is pantothenate kinase-associated neurodegeneration (PKAN)?Pantothenate kinase-associated neurodegeneration (PKAN), formerly called Hallervorden-Spatz syndrome, is a rare neurological movement disorder characterized by the progressive degeneration of specific areas…
Happy Friday Patient Worthians! PW Contributor Tom Seaman talks about what it's like to overcome the mental toll of your rare disease diagnosis. Another PW Contributor suffering from TN, dysautonomia and…
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…
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