WILMINGTON, NC (WECT) - Strength comes in many forms. At 5’1” and maybe 105 pounds, Alexis Smith does not possess the physical strength of a weightlifter, bodybuilder or football lineman. But, the 28-year-old from Wilmington has an inner-strength that many people cannot match. Much of it comes from living with cystic fibrosis, a genetic disease that has no cure. I sensed the rest of her resolve developed over time, after Alexis accepted her diagnosis and then took on the role of CF Ambassador.
“You can’t let it defeat you or define you,” Alexis says about the disease. “You learn how to live with courage. I want to get that across. I want people to know ‘This is what I deal with, and I’m a stronger person’. I walk with my head high.”
Alexis became a CF Ambassador in 2012. She volunteers to tell her story of living with cystic fibrosis, to not only educate about the disease, but to give hope to other patients and families who battle the physical and emotional difficulties every day.
More than 70,000 people around the world live with CF. According to the Cystic Fibrosis Foundation, patients have a defective gene that causes a thick, sticky buildup of mucus in the lungs and other organs. It clogs a patient’s airways, trapping bacteria that leads to infections, lung damage and eventually, respiratory failure. Treatment for some patients includes using an inflatable vest that vibrates the chest at a high frequency to help loosen and thin mucus. Violent coughing spells can leave a patient with a sore chest. Breakthroughs and new treatments have extended the lives of people with cystic fibrosis. The median predicted survival age is now almost 40. When Alexis was diagnosed at about six months old, the average life expectancy of a CF patient was 18.
“It is difficult for a person with CF or their family members to share their stories,” said Kay James, Executive Director of the Carolinas Chapter of the CF Foundation. “They are strong and courageous people as they are willing to be so vulnerable before an audience with many friends and many more strangers. Our heroes are our CF Ambassadors.”
As one of the speakers at a recent Pipeline for a Cure fundraising event to benefit the Cystic Fibrosis Foundation, Alexis admitted that she wasn’t always the perfect patient. She skipped treatments, deciding instead to try to lead the “normal” life of a teenager. She kept her disease secret from all but her closest friends and talks at 6:30 of the podcast about making up a story about why she had to be hospitalized as an eighth grader.
“That was the first time I remember having to tell my friends that I was going to be in the hospital for a little bit,” she remembers. “When I came out I was on IV (intravenous) antibiotics, so I had to go to school with a picc (peripherally inserted central catheter) line in my arm. I remember I wore an ace bandage over it. Everyone asked, ‘What is that?’ I remember telling people that I had run into a tree. I didn’t want people to know. All my close friends knew, and their families, but I was pretty secretive about everything.”
Alexis, her mom and step-father moved to Wilmington from her hometown of Frederick, Maryland when she was 13. They learned the coastal location would be better suited for her physical health. Alexis says frequent visits to the beach have played a part in keeping her lungs clearer. The saltwater air thins out the mucus, making it easier to cough. (Click here to view stories we’ve done on this beneficial therapy). Alexis also credits being active as a cheerleader in high school with helping her stay healthier.
“I have to tell people that every patient is different, there is a huge spectrum of CF,” Alexis says. “I’m not in the hospital all the time. I’m able to live the life that I want to because I’m healthier. A lot of people have this notion that every CF patient is very sickly and not able to do certain things. I’ve pushed myself and I’m able to do a lot.”
After coming to grips with her disease around the time she graduated high school, Alexis began to take on more roles within the CF community. She was a team leader at annual Great Strides fundraiser walks. She was chosen to be a CF Ambassador, and she launched a website, beamaven.org, that discusses both the physical and mental challenges of living with cystic fibrosis. Alexis talks about the website starting at 21:30 of the podcast.
“A lot of attention has been brought to mental illness and CF, because it is stressful,” she says. “It can be very challenging some days. You can be the strongest person with it, and you still are afraid of getting sick. Anything can happen at any moment. That fear hangs over your head every day.”
Which is why many CF families do not publicly speak about the disease. Through her work as CF Ambassador, Alexis says she has been approached by parents and patients thanking her for sharing her story. Through her strength, they’ve come to see hope for their future.
“I just wanted to be open and share my story because that’s how parents get through,” she says. “They saw me and went ‘Oh, she’s healthy!’. It gives them hope. Kids in high school, I know what they’re going through if they felt the same way as me. Some kids feel hopeless. They don’t push themselves because they think ‘Oh, the statistic says I’m only going to live this long, and it doesn’t matter’. You don’t have to see those numbers and be scared because there is so much happening. I’m very confident that we’ll see a cure (for CF) very soon.”
It’s far from easy. Along with the treatments for her disease, Alexis manages her website, works as a full-time nanny and is also a freelance professional makeup artist. She admits there have been days when she’s felt like giving up because of the stress and physical demands. But she says family and friends helped her through the darkest days. That’s why she considers the role of CF Ambassador as so important. To be the lifeline for another patient facing the same struggles.
You can hear the entire conversation with CF Ambassador Alexis Smith by clicking on one of the links listed below.
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