While the majority of patients diagnosed with cystic fibrosis (CF) at birth experience the symptoms of the disease during their childhood, Larry Brian is an uncommon case. The 25-year old patient never really understood the extent of suffering from the chronic and debilitating disease until he went to college. When the disease manifested itself for the first time in his adulthood, Larry decided not to conform to the limitations of the disease. In an effort to fight CF, he launched a series of social networks — with his YouTube channel at the center of the effort — which portrays a young and active lifestyle that struggles everyday with important issues that impact CF patients.
Only few months after the creation of his YouTube channel, Larry already had racked up hundreds of views on each of his videos. His struggle with CF, use of acupuncture, sinus surgery, and workout and nutrition videos are just some of the topics addressed by the vlogger in his videos. However, his active presence in social media didn’t start with YouTube. “I started vlogging this past summer, and I decided to do it because I was getting a lot of interaction from various communities on my CF driven Instagram account,” noted Brian in an interview with Cystic Fibrosis News Today.
The Instagram account DefyToBreathe was his first step toward raising awareness of the disease online, as well as inspiring and motivating others “to better themselves as I was pushing to do.” During the spring of 2014, he started sharing photos of his daily routine and fight against the disease, and now Larry explains that his “only regret is not starting the [YouTube] account sooner so that I could capture everything I had been through as it was happening, which is why I decided I didn’t want to miss that same opportunity with vlogs. If a picture is worth a thousand words, then a video must be even more captivating.”
Larry Brian, who suffers from the CF double delta F508 mutation, is different from most CF patients not only because of his medical history and presence online, but also because of his approach to exercise and nutrition. It is scientifically proven that regular physical activity can help improve patients’ overall health and lung function, and 75% of CF patients exercise, but Larry is particularly active and divides his time between social media CF awareness, iOS app development and bodybuilding. “I try to live life to the fullest all while fighting a genetic lung disease called CF,” he said.
Growing Up With CF
Larry Brian was born in 1989 in Missouri and at six weeks old, doctors understood that something was wrong with his health, but the diagnosis wasn’t clear. After months of not knowing why he was sick, a diagnosis of cystic fibrosis was finally confirmed, but the disease was almost unnoticeable. “I grow up pretty normal, living a normal life. I never missed a day at school, I played three or four different sports [baseball, lacrosse, skateboarding]. Everything went well,” explained the vlogger. “Then I went to college and it was when it all went down hill.”
He attended college two hours from home, and began feeling sick during the second semester of freshman year, ending up with fevers, chills, and coughing severely everyday. “I made excuses for all of that because in my last year of high school I got into body building and I really wanted to workout,” he tells in one of the videos. “So in college I thought the symptoms were related to not eating right anymore. I had never been sick in my life before, so I didn’t know what was going on. The last thing I thought it was, was CF. I had no idea how severe, the gravity of it’s like when you get sick,” he added.
For three or four months he continued to struggle to attend classes, while doctors would prescribe antibiotics to treat what they thought was the flu. After a summer of wearing hoodies and sweatpants to the beach due to fever, he was finally admitted to the hospital with only 19% lung function. He stayed there for three or four weeks and his lung function increased to 55%. Doctors told him that the crisis was related to stress and the germs that were present at the university and were new to him.
Throughout college, his symptoms continued to worsen and Larry developed Allergic Bronchopulmonary Aspergillosis (ABPA) and started being treated at a local clinic, where he had to stay for 10 to 15 days every time he experienced CF exacerbations. However, for a full-time student and part-time intern at a law firm, staying in a hospital for so much time was not an option.
Bodybuilding To Cope With CF
Determined not to settle for confinement inside a hospital, Larry wanted to do something to enhance the effects of treatment and improve his lung function. Therefore, Larry started adding cardio to the treatments by running in the hospital stairs every day. This solution not only helped improve his lung function, but it also amazed his doctors. The CF patient returned to his exercise habits as a bodybuilder, which is both a priority and a challenge for him.
“Being a bodybuilder and having to set diet and exercise as one of my biggest priorities is a double edged sword when it comes to Cystic Fibrosis,” explained Larry. “It is great for my lung function and overall health to get the exercise that I do, but it is hard to pin point my body’s tolerance due to CF and my lung function only being at 44%. If I work out at the volume of a normal bodybuilder my body quickly becomes overtrained and I have flu like symptoms for several days, but if I reduce my volume by too much I quickly start to lose weight and my progress in the gym.”
“When it comes to nutrition most of the CF community tries to get the majority of their calories from fat, but I have found better results, along with other CF bodybuilders I know, by keeping my fats on the lower side and trying to acquire most of my calories through carbohydrates and protein. Overall, it really comes down to everyone being their own individual and what works for one might not work for another, but that being said I truly believe my diet and exercise is one of the biggest reasons my lung function has increased from 26% 2 years ago to 44% today,” he added.
Now, Larry is dedicated to helping others through social media, and both nutrition and exercise take center stage in his vlogging. Larry explained that he receives a lot of positive feedback from other patients as well as families about his videos, which he aims to be motivational, entertaining, relatable, and educational for people of all different interests. Talking about this new experience of vlogging, Larry said that “the most important thing in this experience of sharing my life with CF is just to show people that no matter who we are, or where we come from, we all have struggles in life and it’s how we deal with them that makes the difference!”
In a similar story, read about 23 year-old CF patient Beau Rich, who undertook an inspiring cross-country journey across the United States, visiting some of the most picturesque nature spots along the way, in order to create a compelling documentary on how those with CF can lead an active lifestyle. During the course of two weeks, Rich traveled the country, challenging himself to persist in pursuing his dreams while managing his health, all with the help of film student and cinematographer Miles Stancil.