Ah the New Year. Before I was diagnosed with a chronic illness, I used to make similar, casual New Year's resolutions like "drink less alcohol" or "spend less money eating…
Merry Christmas Patient Worthians! And no worries if you don't celebrate it, because we're celebrating the overall spirit of giving by supporting this crowdfunding initiative with CysticLife. This month, we have been teaming…
When Harry Met Chelsea I frequently refer to online dating as “shopping for men.” I have my list of attributes I’d like to find in a mate, and the men…
Star light, star bright, first star I see tonight? Forget it--Shire's growing something a little more down to Earth. As part of their Me, Not HAE campaign, Shire's new site…
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.,…
Are you planning on being in Miami, Florida, on January 26, 2016? YOU ARE?!! That's great! You can join the Cystic Fibrosis Lifestyle Foundation (CFLF) and the Miami Marathon 2016 for…
Hello Pittsburgh! The Cystic Fibrosis Foundation is joining the New Balance Marathon Training team on three separate days as they train for the Pittsburgh Marathon. So, if you have a mind to…
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…
It’s not often that the “old” people are worried about the “young” people having heart attacks. But, unfortunately, that’s the reality for the Watts family. Their seven-year-old daughter, Avery, has…
I have no experience living with cystic fibrosis or understand what it feels like to go through the daily regimen. I do know what it’s like to give care to…
For many cystic fibrosis (CF) patients who grew up in years past, one of the greatest hurdles and frustrations was being told they couldn’t do something, especially sports or physical activities. Sometimes…
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…
A recent report from the British Heart Foundation (BHF) stated many more people in the UK are at risk for early heart attacks than previously thought. The culprit? High cholesterol. And not the…
Okay, people in the CF Community, listen up! A new targeted treatment for Cystic Fibrosis (CF) may be on the horizon sooner vs. later, and I’m pretty freaking excited about it! This…
Although it is often called the "Most Wonderful Time of the Year", people can get pretty up-in-arms about holiday lingo and traditions. If you don't believe us, just ask Starbucks...…
There are actually three types of the disease called Tyrosinemia, but in this post, we're only going to focus on Type I. Tyrosinemia, type 1 (TYR 1) is a genetic disorder…
In the past, 14-year-old Louise Stewart-Scott, was used to flying through the air and across the mat during her gymnastic routines. But, at the age of eight, she was diagnosed…
We know that the cost of medical treatment, even with great insurance, is high. Transportation, parking, inability to work full-time because you are taking care of a very ill family…
Whether you think so or not, you have the strength to live well with Myasthenia Gravis (MG). But for your times of doubt and frustration, it can be helpful to have…
Shelby Klug, a 17-year-old from LA, was diagnosed with cystic fibrosis (CF) at age 2. Cystic fibrosis is a genetic disorder that causes damage to the lungs and digestive system.…
If you have cystic fibrosis, you might know that it is linked to low PH levels. The current PH sensors aren't sensitive enough to capture molecules at different stages called…
"As far back as I can remember, i was told pain was normal, or in my head, and to keep going" Welcome to the life of Dawn Michelle Shepley...and,…
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,…
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.
