Do you want to be part of cervical dystonia history? Do you want to actually get paid to take an injection to treat your symptoms? C'mon, you know the answer…
Michael White, a 45-year-old writer from Vancouver, British Colombia, put everything he had on the line to take a leap of faith and write a book about his passion: music.…
It's said that Nero fiddled while Rome burned--by comparison to a musician in China's activities during brain surgery, Nero had it easy. Imagine jamming out on your guitar while surgeons operate…
You spent years taking piano lessons, spent thousands of hours practicing, and were enjoying your professional career with an orchestra. Then IT happened. Every time you sit down on the piano bench, your…
You made it! It's the end of the week and time for yet another Editor's Choice post. What do heart failure and narcolepsy have in common? Do you have a…
The end of 2015 brought a lot of changes into my life, some unplanned - and frankly - a little scary. I lost my job, and at the same time…
Living with dystonia is sometimes reminiscent of the plight of Sisyphus, a king from Greek mythology. Sisyphus was king of Ephyra who was punished for chronic deceitfulness and condemned…
In an ordinary world, one girl faces an unexpected fight. Fated to take on the mantle passed down by her mother, she must defend her life against this incredible foe. Will she deny…
Life would probably be easier for three-year-old Kayden Bell if doctors could determine a diagnosis for him. So far, he's been diagnosed with microcephaly, global developmental delay, hypomyelination and dystonia with…
Another science fiction trope may be moving closer to science reality. Smartphone and tablet-maker Samsung and medical device company Medtronic have joined forces to create something startling: Neural implants that…
Todd Hart's name should really be Badass McGee. A triathlete, Hart completed the 2009 Boilermaker 15k in 58:22. (The race's site bills it as "the most competitive 15k road race…
Most girls rebel at the idea of ever becoming their mother. The passive aggressive judgments, the dancing in the grocery store, and of course, the embarrassing stories. As described by…
It’s happened to all of us. It’s Friday afternoon. You’re at the airport, waiting anxiously by the gate to catch the next flight out. It’s been far too many days…
Noted Denver saxophonist Clare Church has played with some of the greats, including Tony Bennett, the Temptations, and Dizzy Gillespie, but two years ago something changed. In an interview with CPR.org's…
Writing 90,000 words is no cake walk for anybody, but Liz Nugent, a top author in the United Kingdom, made it happen despite the challenges that she faces as a…
“We all need role models who fuel our desire to make the world a better place. Mine is my dad.” These are the opening words of a powerful blog post…
Have you ever heard your voice on a recording and thought, "Is that what I really sound like?" You rehearse exactly what you want to say, repetitively hitting the restart…
What's the best way to raise money and awareness when you have a rare disease? Organize or participate in an event, duh. That's exactly what Dwayne Backer has been doing…
Matthew Merryman, a seven-year-old boy battling a rare form of brain cancer, is a fighter. Point blank. In an article recently posted by The Frederick News-Post out of Frederick, Md.,…
When my dystonia was severe, my neck was turned and locked towards my right shoulder. Most people would look and not say anything. Then there were some who looked and…
Beginning last year, Dystonia Europe launched a campaign that called people to do one thing: JUMP! Participants were challenged to JUMP for Dystonia, and throughout the past several months, all…
Dystonia causes involuntary muscle contractions and can result in abnormal posture. There are a number of different types of dystonia, and there is no known cure. Parkinson's disease (PD) is…
Sam Bradley hit the dystonia jackpot, but that's not a good thing. Bradley won the NCAA record for the quickest (wrestling) pin in college, and is a black belt in karate,…
He’s been featured on the National Geographic Channel. He’s shaken hands with President Obama. He’s been stopped by the secret service. Even after all of that, Jason Dunn keeps going, and he’s taking his dystonia with…
How much do you think the average five-year-old girl weighs? According to kidshealth.org, the answer is about 45 pounds. Now, how much do you think a wheelchair for that same…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
