“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…
Virginia Beach resident, Tina, has a motto: "I'm more than a conqueror!" Her medical journey began in 1993 when she started to experience the swelling of various parts of her body.…
You know a person living with a chronic illness is giving you the REAL story when, after being asked, “What does your Cushing’s disease affect?” she (in this case the…
Question: How can healthcare companies provide “better patients with better services at better costs?” This was the question on everyone’s mind during the FORBES Healthcare Summit last month, especially Stacey…
When radio personality, Mike Farwell, and three of his intrepid listeners decided to give up drinking beer for 115 days (ending on Christmas) he asked the Block 3 Brewing Company in…
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…
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