As we join in the #DystoniaAwareness movement to make September the official month to support the Dystonia community, we will be posting blog posts from the Dystonia Muse herself, Pamela…
When Dystonia has got you down, just ride on. The UK site, DorsetEcho, reports that's Andrew Beale’s approach. Beale will cycle 33 miles through the streets of the United Kingdom…
Imagine you live in New York City and a procedure that could save your life could only be conducted in Los Angeles. Well rationally you would just take a plane…
We have some great news! Patient Worthy is learning to speak Spanish! I mean 37 million people in America do, so it's time for us to as well. The heart…
Writing on the Internet can feel a lot like screaming into the void. You never know who can hear you or who even cares. But with the rare disease community…
Tyler Staab was like any other seven-year-old boy—energetic, rowdy, and super interested in sports and playing outside. But in February, 2005 his whole world changed, and that of his parents.…
Kimberly was diagnosed with chronic, late stage Lyme disease just this June, after suffering for over a decade. By the time it was finally discovered she had three co-infections and…
Did you know September is Dystonia Awareness month! It's in the process of becoming nationally recognized, all it needs is your signature! Sign the petition, visit Dystoniaaware.org, or watch their video…
Caring for a child diagnosed with a rare chronic condition is no small feat for anyone, but this Mom, Rebecca Martin, is definitely rising to the challenge. In her blog,…
Here at Patient Worthy, we love to share the news. The ability to keep you up-to-date on the latest and greatest about different rare diseases is the heart behind our…
We last left Allen's story where this brave soldier had to leave the service due to the immense pain caused by a mystery condition. To get caught up on…
Surfers are known for their "hang-loose" no worry attitudes. But one thing that most people tend to overlook is their relentless spirit and the will to overcome all odds. Meet…
What does roasted corn have to do with cystinosis? If you're scratching your head, don't worry: At first, we were too. But in Buffalo Grove, IL, an annual Corn Roast sponsored by…
How much do you hate having to watch your common variable immune deficiency (CVID) child infuse? It’s heart wrenching, not to mention, exhausting dealing with the push back from children who…
Ciara and Billy Nichol, who live in northwestern Ireland, were overwhelmed when a cry for help went viral. Their daughter, Ellie, suffers from one of the rarest diseases in the…
What comes to mind when you think of dancing? Blushing ballerinas? Fred Astaire cutting rugs with Ginger Rogers? Dancing Chihuahuas? Far be it from me to criticize either mental image,…
When a doctor says it’s necessary to do a lumbar puncture on your two-year-old son, momma bear instincts kick in. Health News Digest reports that’s what doctors recommended when Lisa…
The people have spoken. The Patient-Focused Drug Development Initiative of the Food and Drug Administration (FDA) has announced the selection of diseases it will address during 2016 and 2017. Which…
No one likes shots. We are talking needle shots. And no one likes hereditary angioedema attacks. So it’s no secret that people having an HAE attack don’t want to give…
In this blog posted to the Michael J. Fox Foundation for Parkinson's Research website, retired attorney Allison London, who also has dystonia, talks about the gifts that come with having…
Everyone deserves to have a hero. Whether it's a fictional one that fights baddies or a gentle giant who use to tuck you in at night and read you bedtime…
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On August 17, 1999, Ian Kent woke up with a gnarled body. "Two years later I learned to walk again," he told the Toronto Star. Kent had been a competitive…
Here’s the scenario: You or someone you love has just been diagnosed with high cholesterol. You’re probably on overload trying to digest what this life-threatening condition means, the impact it…
Serogroup B Meningococcal disease (or Men B): is a serotype of meningitis that is common in the US and can, take families by surprise. The viruses victims can start feeling…
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