No matter what disease or disability your loved one has, being a caregiver is a lonely business. After all, aren't you the one who's supposed to hold it all together?…
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…
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…
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…
Not long ago, Vertex Pharmaceuticals scored a big one for their investors—the European Commission has approved the use of ORKAMBI® (lumacaftor/ivacaftor), for the treatment of cystic fibrosis. This breakthrough treatment will be used…
Over the past few years, Casey Higgins, a 27-year-old Ohio woman, has required supplementary oxygen 24/7 to help her breathe. Diagnosed with the genetic disease cystic fibrosis at the age of…
Robert began his mission to raise awareness of Cystic Fibrosis after getting to know someone who had lived with it for forty one years. As he puts it; “She inspired…
On the fabulous Cystic Fibrosis Lifestyle Foundation website, CF blogger Brian Callanan has issued a call to action. He wants to hear from all of you whether you are reactive or proactive…
What do you do with 180 minutes? Think about it for just 1 minute... Now, spend 1 more minute watching the video below. For the some 30,000 people living with CF, days…
It could be a story out of a spy novel: While coded messages are being passed, an outsider attempts to infiltrate and disrupt communication. Part of the mission involves smuggling important equipment…
Ever have one of those days when you just weren’t feeling very enthused about your life? You know what I’m talking about. Those ho-hum blues. Those days when you don’t…
PatientWorthy is teaming up with CysticLife.org to spotlight some of the members in their awesome community! CysticLife.org sprang from a blog started by CF patient, Ronnie Sharpe, to track his life…
According to the Cystic Fibrosis Foundation, about 30,000 people are living with CF in the US and just about 1,000 new cases are diagnosed each year. Cystic Fibrosis (CF) is a chronic inherited disease.…
We’ve known for a while that the key to ensuring a richer quality of life for people with cystic fibrosis is early detection and treatment. Of course, that’s much easier…
Though she’s lived with cystic fibrosis since she was 17 months old, Olivia never thought of it as something that made her different. Growing up, her daily medication routine was…
I know. I know—nobody likes sifting through a bunch of scientific research “shtuff.” I sure don’t—especially when they don’t dumb it down for a layperson to understand. But when we’re…
Oh Canada, people think you’re all “please and thank you,” and maple syrup, but I know the truth: You’re a fighter and that fight is most obvious in the Canadian…
CysticLife.org, an online network for the cystic fibrosis (CF) community, is embarking on a historic fundraising effort to support community driven research in CF. With your help, CysticLife and Mayo Clinic…
Understanding of cystic fibrosis (CF) has, thankfully, come a long way from its earliest descriptions of children being “bewitched” or “hexed” because their sweat tasted of salt. And the life-expectancy of kids…
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