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…
Can you imagine being only 7years old and having painful, unexplained, and reoccurring swelling on all parts of your body? How scary it must be to have your face, feet, legs,…
If ever there was a “girl next door,” it’s Ashley Coleman, a beautiful, bright-eyed-blonde and very active young woman! She’s got the smile of a Homecoming Queen! Even though Ashley…
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…
So…. As a dog fanatic, reading the Wall Street Journal headline “Why Dogs are Some Scientists’ New Best Friends” gave me the heebie-jeebies at first. I’m the kind of person…
If you have been anywhere near the hereditary angioedema (HAE) community, you may have seen or even asked a question similar to the one regarding the gender differences in the…
The Corr family has had a tough year. Tough, sure, but equally as joyous. They’ve been adjusting to life with their year oldest daughter Harriet. Soon after Harriet was born came…
Duchenne muscular dystrophy (DMD) may not sound so bad, but it is. What's so fatal about muscle degeneration? you might ask. Well, the heart is a muscle, so there's that. Luckily,…
Andy Long's mom was sick all her life. She passed away in 1969 at the age of 24. Andy, just 5 years old, was sent to live with his paternal…
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…
Lady Gaga was onto something when she penned the lyrics “just dance; it’ll be okay.” Becca Friedman has been dancing her whole life, and despite her life-threatening cystic fibrosis…
Mary Vicencia knows what it’s like to be sick as a dog. For a while, she was basically an expert in feeling downright bad. In fact, she’s a lot like…
“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…
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