What Does It Feel Like to Have Cystic Fibrosis?
Key takeaways:
Alyssa Rabiola was diagnosed with cystic fibrosis as a baby.
She manages her condition with daily medications and a fitness-focused routine.
Alyssa has also built a supportive community online.
Alyssa Rabiola can’t remember life before cystic fibrosis (CF). She was diagnosed with the genetic disorder at 3 months old. While it's a constant part of her life, the 27-year-old is determined to not let it define her.
Detection and treatment of CF has advanced greatly since the Nashville resident, who recently moved from Los Angeles, was diagnosed as an infant. At that time, the disease couldn’t be detected during pregnancy.
Alyssa was born with a low birth weight, and her grandmother became concerned when she was exhibiting symptoms of CF, such as coughing and wheezing. Alyssa’s mother took her to a pulmonologist in Los Angeles. A sweat test that measured the amount of chloride in her sweat confirmed that she had CF.
Despite CF being genetic, no one else in Alyssa’s family has it. “Both parents must have the cystic fibrosis gene, and if they do, the child has a 25% chance of having CF,” Alyssa says. “So, my mom and my dad both had the gene, but obviously they didn’t know.”
Growing up with CF was often lonely and isolating
Cystic fibrosis can be a lonely disease, Alyssa says. “As a kid, I felt like I was the only one in the world who had anything wrong with me.”
She says the 2019 movie “Five Feet Apart” about two teens with CF is a good depiction of growing up with the condition.
“I’ve had to social distance from other CF kids my entire life,” she says. “When I would go to the doctor, I’d have to wear a mask and be on the opposite side of the room. Because CF patients have really sticky mucus, it’s very easy to transfer germs to one another. I felt that I had no one to relate to because I couldn’t be around other kids who had CF.”
Social media has helped her build community and awareness
Alyssa began posting on her TikTok account about living with CF, along with her content about fitness, health and wellness, and things she enjoys doing.
“I have posted about it [CF] to bring awareness. And it’s been cool,” she says. “I’ve had girls reach out to me and say they have CF, and then I follow them back on social media. It’s a way for them to see someone else living their life with CF, which is inspiring.”
Alyssa uses social media to inspire other young women. It was also the impetus behind her organization, For the Gals LA, which connects women through wellness, fitness, and community events. The inspiration began when she posted about hiking the popular Runyon Canyon Trail near Hollywood and asked if anyone wanted to join her.
“Twelve girls showed up, and I was shocked. So I posted about it again. After the first hike, hundreds of girls were like, ‘Please do this again. I want to come next time.’”
Alyssa wants to launch a chapter in her new hometown of Nashville. “It’s important that girls support each other and try to be nice to each other and be there for each other,” she says, adding that she wants to help people find their safe space of belonging.
“Having CF, I felt very isolated and very alone, and that no one would understand me. So I’ve always had a heart to make people feel seen and know they’re perfect just the way they are. I want people to feel included because everyone is going through stuff, and it’s important that we aren’t alone.”
She manages CF with medications and routine
CF is a manageable disease, and while it’s generally associated with the lungs, it also affects digestion. Alyssa’s medication regimen includes omeprazole (Prilosec) — a proton pump inhibitor — and pancrelipase (Pertzye), which help her digestive enzymes.
“I’ve had so many stomach issues throughout my life” because of CF, Alyssa says. “Sometimes I have to adjust what time I’m going to eat because certain foods upset my stomach. That can be really frustrating. There were times in college especially when I would call my mom crying because my stomach hurt so bad.”
Alyssa has had nine sinus surgeries since the age of 3. To help her breathing, she also takes albuterol breathing treatments and Pulmosal, a sodium chloride inhalation solution. The medication she’s found to be the most life-changing is Trikafta, a combination of three medications: elexacaftor, tezacaftor, and ivacaftor. She began taking it in 2019 to ease symptoms like mucus buildup in the lungs.
“That medication was a really big breakthrough for the cystic fibrosis community,” Alyssa says. “It changed my life, and it has literally saved people’s lives as it is enabling people to be taken off of the [lung] transplant list.”
CF has altered the way Alyssa starts, and ends, her day.
“My morning routine isn’t just to wake up, get dressed, and go to work. I have to wake up, do my breathing treatment, make sure I take all my medications, and eat with that. I have to do a full morning. And to me, it’s normal. But even now, sometimes I think, ‘Oh, I wish I could get up, get dressed, and go.’ My mornings would be so much faster.”
Weather changes and fluctuations in temperature can affect her coughing, but she focuses on gratitude. “To put a positive spin on it, these times when I don’t feel well make me so much more grateful for when I’m healthy,” she says. “And that's what motivates me to stay healthy.”
Working out helps her feel healthy and accomplished
Alyssa prioritizes fitness, which boosts her physical health as well as her mental well-being. She especially enjoys focusing on cardio.
“When I’ve done this consistently, my pulmonary function test results skyrocketed,” she says. “My results were higher than the average person’s.”
Frequent workouts are an essential part of her self-care.
“I feel very accomplished afterward, because at one point I was told I couldn’t do that,” Alyssa says. “In terms of my own self-care, running and cardio and moving my body are so important because it’s like extra breathing treatments throughout the day. I enjoy fitness. I fell in love with it. But the biggest thing is that it keeps me healthy.”
What does the doctor say?
Patricia Pinto-Garcia, MD, MPH
Medical Editor
Cystic fibrosis is a lifelong condition that affects the lungs and other parts of the body. People with cystic fibrosis don’t make a protein that helps create mucus. Without this protein, they make mucus that is thick and sticky. These thick secretions keep the lungs, digestive system, and reproductive system from working properly. Over time, this leads to permanent organ damage.
For decades, treatment for cystic fibrosis focused on managing symptoms and preventing infections. People needed to take dozens of medications and respiratory treatments each day just to manage day-to-day symptoms. But even with perfect use, these treatments could only go so far. In the early 2000s, most people with CF only lived to be about 30 years old. Today, that number is more than double and getting bigger.
Advancements in treatment are helping people live longer, healthier lives. Cystic fibrosis transmembrane conductance regulator (CFTR) modulators are a class of medications that treat the source of cystic fibrosis. CFTR modulators can stop organ damage from getting worse. Thanks to these medications, some people with cystic fibrosis have been able to cut back on daily treatments without losing any lung function.
Trikafta is one of the most commonly used CFTR modulators. It is available for children as young as 2 years old. Scientists predict that with these new treatments, children with CF may live into their 80s.
There’s no cure for cystic fibrosis. People living with CF still need life-long treatment. But that treatment carries the promise of a long life and a bright future.
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