What Everyone Should Know About Cystic Fibrosis
Cystic fibrosis doesn’t look like anything. From the outside, it is an almost entirely invisible disease. But those living with the disease know that the symptoms are all too real.
Increasing public awareness
Because it’s a diagnosis that people often can’t see, cystic fibrosis isn’t something that is widely talked about. In 2018, the movie ‘Five Feet Apart’ brought cystic fibrosis to the big screen, increasing public awareness of the disease and its far-reaching effects on the body.
Still, one motion picture is far from enough to educate people about CF.
It takes time, and it takes speaking up. To spark more conversations about CF, we reached out on the Cystic-Fibrosis.com Facebook page, asking our community to fill in the blank: “Not many people know that cystic fibrosis is ___________.”
Almost 50 of you responded. Here are your answers.
“It’s not contagious”
Several of you pointed out that cystic fibrosis is genetic—and not something that is transmittable. However, it can be easy to see why someone might assume that it was contagious, given that the diagnosis can cause a lung infection. Still, cystic fibrosis is caused by a single gene and nothing else.
"Also affects your lungs… and all your other organs, too”
As so many of you know, this diagnosis mainly affects the lungs, but that doesn’t mean the rest of your body is left untouched. Rather, cystic fibrosis can wreak havoc on the pancreas, liver, kidneys and intestines. Symptoms can range from heartburn to liver complications to infertility.
“Affects pancreas, liver and intestines…”
“It not only affects your lungs, but your pancreas and, depending how severe, your other organs, too.”
“Is more than just a lung disease.”
“Affects your lungs, and it gets you all over!”
This diagnosis is especially cruel because it shortens one’s life span considerably. For now, there is still no cure. However, it can be managed, and medicine today is far more effective now than it ever has been. Proactively treating the airways, along with a managed diet and exercise plan can increase someone’s years dramatically.
“Very, very heartbreaking. I lost a grandson at age 15 to CF.”
“Devastating. I lost my son 2 years ago.”
As a few of you pointed out, the downside to those medical advances is cost. Some medicines, including elexacaftor paired with tezacaftor and ivacaftor, aka Trikafta, was approved in 2019 to a cost of $311,000 a year—making these treatments out of reach for the majority of people living with CF.
Perhaps the hardest piece of all of this is how isolating it can be to live with cystic fibrosis. As soon as school friends or coworkers learn of its presence, it seems it’s far too common for them to pull away—some for the uneducated reason that they believe they might catch it, and others because they don’t want to face possibly losing someone. Or, they simply don’t know how to be around someone who is sick.
But, if more people learn just a little bit more about the disease, or see it represented more in media and online, then they can see that having a friendship with someone with cystic fibrosis is the same as with anyone else—it comes with good days and bad days, but, through it all, we would all generally say that we are better off because of friends.
Thank you for being here
We really appreciate those who shared about your experiences with cystic fibrosis. Through these stories, we hope to strengthen this community as a place for those affected by the disease to find comfort, hope, and understanding.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?