The CF community was delivered great news the other week: Vertex’s tezacaftor/ivacaftor combination treatment significantly increased lung function (ppFEV1) in patients 12 years or older with certain mutations of the CFTR gene (cystic fibrosis transmembrane conductance regulator).F 508 For those who are new to, or not…
Columns
No matter how good I feel, there’s always a sense of anxiety and uncertainty when I walk into a routine CF clinic visit. Thoughts swarm my head as my name is called to walk back into the office: What if my PFTs are down? What if my blood tests…
Airports can be stressful. With the unpredictable delays, cancellations, and upsets of travel, it’s only natural to take some precautions before going on a business trip or vacation. However, preparing for travel becomes inherently more complicated when the traveler has a chronic illness like cystic fibrosis. I wish…
For the first time, we see that about 50% of people with cystic fibrosis (CF) are adults. While CF still may ring as a pediatric disease to those who have been familiar with CF for many years, we must adapt our mindset to accommodate the adult population. When I was…
By now, we’ve all heard that steps have been taken toward repealing the Affordable Care Act (ACA). Even within my network of friends and family, I’ve heard mixed responses. There are those who detest the ACA, those who believe it should be protected, and those who think it should be…
Editor’s Note: In his first post for Cystic Fibrosis News Today, Gunnar Esiason writes about his experiences in managing CF entirely on his own for the first time when he went away to college in 2009. Gunnar’s column explores the uncertainty that surrounds those with cystic fibrosis as they fight to live…
“Brennen Reeves just wanted to be normal. The only problem: the fatal lung disease, cystic fibrosis. The only solution: a double lung transplant. Hilarious and heartbreaking, this solo show is one man’s journey to live beyond the odds. Co-created and directed with David Lee Nelson (Elephant in My Closet, Status Update).”…
This past Saturday, Fedex brought a small unassuming box to the porch of my home. It didn’t take me long to open it and find Vertex’s newest drug, Orkambi, wrapped in its white and lime green colored box. Inside lay foil wrapped pills neatly labelled Sunday through Monday to…
On Thursday, July 2, the Food and Drug Administration made the announcement that Orkambi had been approved for people with cystic fibrosis who are age twelve and older with two copies of the F508del mutation. The announcement was followed by a swirling of excitement through the CF community and…
My last four articles have highlighted various stem cell types and their potential therapeutic application for those with cystic fibrosis (CF). However, the next logical question to ask is how exactly does cell therapy work? Stem cell therapy in CF is a hot topic for discussion, so I find it…
Your CF Community
Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.