Emily Lyons hasn’t stopped thinking about her sister Julia since she passed away from cystic fibrosis in 2011 — and she doesn’t want to. So, she created JWLS, a timepiece company with a set of lungs as its logo. Emily donates a portion of proceeds from watch sales…
Mom and I had flown to Denver to meet a specialist and strategize treatment for my nontuberculous mycobacterium. Part of the clinic visit concerned treating my barren appetite and nonstop nausea. We’d tried nearly every anti-nausea prescription by then, and…
In their minds, cystic fibrosis patients are cycling through an African safari, exploring the animals and environment. In reality, they’re sitting atop a bike machine with a thick, black visor engulfing half their face. The University Hospital Llandough in the U.K. is…
“There was a girl I was very interested in,” says Gunnar Esiason. “We were hanging out and, it’s a long story, but my feeding tube exploded on her.” “I was dating this guy, and he saw my port-a-cath and goes, ‘Oh my God, are you ok?…
Ba-doop. A notification pops up. It’s an old friend: “Hey, Brad. How are you? It’s been so inspiring following your journey!” “Aw! I’ve been doing great, thanks.” Abruptly: “So, I know of a fantastic product…
Most CF patients already know the classic places or objects to be cautious around when it comes to germ precautions: remote controls, nebulizer cups, cell phones, hospital areas, etc. With the flu outbreak in epidemic levels and the general need for CF patients to be extra cautious of germs, it’s…
The gastroenterologist (GI doctor) shut the clinic door and towered over me, strong, bronzed, and healthy. He checked my chart and saw I had lost 3 pounds. He abruptly barked at me about my “lack of effort” in gaining weight. He yelled that it’s as simple as forcing…
After several decades of research into cystic fibrosis, there’s a wealth of weird information out there about the disease, its common bacteria, and medications. How many of these did you know already? 1. It is hypothesized that cystic fibrosis genetics have resistance to infectious diseases such as tuberculosis,…
With CF, there are fights to live taking place in the hospital. And then there are fights to live taking place in the streets and in political offices. Germs will always be out to kill us — we’ve got to accept that. But do we need to accept…
Adventuring with cystic fibrosis can be a headache when dealing with typical travel planning on top of your health considerations: packing all meds and supplies, having a crisis plan, knowing airport security rules, and avoiding bacteria and viruses during the travel. Here are some tips to help ease the traveling…
Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.
Get regular updates to your inbox.