A young man opens up about his battle with cystic fibrosis and shares why he’s spreading awareness.
Gunnar Esiason, son of former NFL quarterback Norman Esiason, is 26 and living with cystic fibrosis (CF). He’s the current director of the Boomer Esiason Foundation, which works to raise awareness and improve quality of life for those affected by the condition. We sat down to talk about his past and present and why he’s optimistic about the future of cystic fibrosis.
What is cystic fibrosis, and how does it impact your daily life?
Cystic fibrosis impacts just about every single day of my life. The condition primarily impacts my lungs and digestive tract by clogging organs with thick, sticky mucus. It is terminal, and there is no cure. The presence of such mucus in the lungs and airways allows for chronic respiratory infection. We always say that CF isn’t what’s trying to kill us, it’s the bacteria that’s doing it. For years, we’ve been treating the symptoms of CF — the cough, chest tightness, infection — with inhaled medications, steroids and antibiotics. On the digestive side of things, we use pancreatic enzymes and supplements to help us gain weight. A lot of people with CF, myself included, have a hard time putting weight on. Not only do we have a hard time absorbing calories, we also expend a lot of energy fighting off chronic infection. I actually have a feeding tube. My personal goal is 5000 calories each day between tube feeds and regular eating, yet I am still very lean and probably will be for the rest of my life. The treatments, medications and therapies are all time consuming. I spend about two hours using my nebulizer, plus an hour total on my airway clearance vest throughout the course of the day broken into two sessions. My overnight g-tube feed runs for about seven hours, and I’ll take upwards of 30 pills a day.
What does CF look like if it goes untreated?
CF is an ugly disease that can progress very rapidly if untreated. Compliance to medications and therapy is of the utmost importance and ultimately one of the keys to success in the face of CF. Imagine living with something like pneumonia every single day of your life. When you treat it, you feel better and can do the things you want to do. If you let it go untreated, the possibilities in life become more and more limited.
What are your hopes for the future of CF and the medicines and technology associated with the disease?
Ultimately when people hear the term health care, all they think about is going to the pharmacy and picking up something that will make them feel better. That’s far from the truth. In CF, we are at the center of the dynamic relationship between drug development, government, pharmacies, pharmaceuticals, care providers and insurers. My hope is that CF drug development will continue to charge forward. We are making in strides in cystic fibrosis research that are unlike any other disease out there. It’s been a long road, but we still have a long way to go because of the genetic nature of the illness and the personalized medications we will require. No two patients are alike. I do think that within the next decade it won’t be out-of-the-norm for people with CF to start families. Until then, it’s up to us — patients, researchers, doctors and everyone else in between — to play our roles in persevering through adversity.