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…
This month, I came across the most refreshing article written by Caroline Newman and featured in UVA Today's Art & Culture section about one of the longest living cystic fibrosis survivors.…
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…
Everyone remembers the kid in class who wouldn’t stop talking long enough to know the lunch bell rang. Or the bad dinner date that wouldn’t shut up about their cat.…
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…
Happy Friday PatientWorthians! We are so excited to announce our partnership with CysticLife this month. PatientWorthy is teaming up with CysticLife.org to spread awareness of CF and support their collaboration with the Mayo…
As you probably know by now, this month, PatientWorthy is teaming up with CysticLife.org to spread awareness of CF and support their collaboration with the Mayo Clinic for a community-driven research project…
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…
Let’s blow your mind for a minute. There are approximately 7,000 different types of rare diseases, and more being discovered every day. According to Global Genes, there are 30-million people in…
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…
Ambry Genetics is a service provider to research and development physicians and patients. they've been around since 1999 and have become an authority and trusted source in genetic counseling. Ambry…
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…
Okay okay. While Taylor Swift is known for bringing celebs together on the stage... ...she isn't known for any significant medical findings that might advance the field of cystic fbrosis. BUT she…
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…
One of the (many) things that makes cystic fibrosis so difficult to treat is that there are many mutations of the disease, some affecting very, very tiny subsets of the…
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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