Happy Independence Day Weekend! As the firework shows wind down, we want to wrap up the week with three great contributor stories, and one research update. First, we have some…
I have lived with chronic pain from a neurological movement disorder called dystonia for nearly 20 years. It reminds me of the bully who picks on kids in the schoolyard…
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…
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.…
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…
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…
When we are faced with a limiting health issue where performing "simple" everyday activities becomes a challenge, our self-confidence and self-worth can dwindle. This can happen with any health condition…
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