Photo: Travis Flores (YouTube)
Treatment and management of Cystic Fibrosis (CF) has come a long way. It used to result in children dying at very early ages, but now they can live much longer and even flourish well into adulthood. This is a result of novel treatment methods, enhanced specialized care, dietary changes, and overall better disease management. Children who previously never had a chance to live can now achieve great things during their life. These young adults who have accomplished so much send a message of hope, bravery, and endurance to young children battling CF.
A triathlete with cystic fibrosis
One example of a CF patient who exceeds expectations is Lisa Bentley, the Canadian triathlete. Having been diagnosed at age 20, it would have been understandable if it had taken the wind out from under her wings. Yet, like many people who face adversity, Lisa flourished and used her diagnosis as motivation to become a famous athlete. During her athletic career, Lisa won 11 of the 33 Ironman races that she participated in. People who are born with a clean bill of health and face minimal challenges in life would struggle to achieve this. As someone who was diagnosed with a threatening disease at such a formative age, her work is even more impressive. The impact that her success story could have on young kids with CF who aspire to be athletes is huge. Whether she knows it or not, Lisa has taken her career and turned it into a symbol of hope for CF patients.
Like Lisa, the 28-year-old Australian rugby player Nathan Charles has shown the world that nothing is impossible and that you can be an athlete with CF. To date, Nathan is the only person in the world with CF who is a professional athlete in a contact sport.
Using cystic fibrosis to give back
Using your career to give back or raise awareness about a cause important to you can give life more meaning while making the day to day grind of working more tolerable. Jeremie Saunders is a yoga instructor and CF patient who is the main character of a new documentary about CF called Sickboy, based on his podcast of the same name. For him, raising awareness about CF is important. He knows that he will not have children, so he must leave behind something else that will bring value to the world. During his episodes, his two closest friends have frank and open discussions about what living with CF is like. This type of broadcast about a disease is important for a number of reasons. Not only does it raise awareness about the disease, but it destigmatizes it as well. Conversations that are open about uncomfortable topics create a space for people to feel safe discussing challenges they may have, and can empower other people with CF to open up and express their feelings about their illness. It helps build a community for people who may otherwise feel alone.
Lisa and Jeremie are not the only people who are empowering and helping people with CF through their careers. At 38, Ian Pettigrew, who is an award-winning graphic designer and photographer, was diagnosed with CF. Since the lifespan for people with CF has increased, children are no longer the only people affected. While the increase in lifespan is great, it also means that adults with CF are left with fewer resources and support than children. Ian decided to use his skills and success to change this. He created a portrait photography project called Just Breathe: Portraits of Adults Living with Cystic Fibrosis and turned it into a book. Ian said that he wanted this project to shed light on the physiological challenges of CF. Ian later did a second project called Salty Girls where he specifically focused on women with CF.
A blog to raise awareness within the community
Some personal projects that people start end up becoming much more popular than they initially anticipated. This was the case with Eva Markvoort who at age 18 was diagnosed with CF. Born in British Columbia, her project came in the form of an online journal that she started to talk about her life and her experience with CF. She called the journal 65_RedRoses, since ‘65 roses’ sounds very similar to cystic fibrosis, especially when pronounced by children. Unexpectedly, her blog ended up becoming extremely popular in the CF community. Not only did it receive more than one million views in the span of 4 years, but it also succeeded in raising awareness about CF and the need for organ donors, as well as providing support for the CF community.
Two of her friends soon offered and encouraged her to let them do a documentary about her lung transplant experience. The documentary had the same title as her blog and became a tribute to Eva and her work raising awareness about CF. In 2007 Eva got her double lung transplant. Unfortunately, her body rejected the transplant within two years and she passed away in 2010. While this may seem like a sad ending, it is not in fact an ending. She and her story live on through her journal and documentary, and all of the other lives they have touched.
A successful non-profit founded by a 13-year-old
While many people are diagnosed with CF in adolescence or young adulthood, some like Claire Wineland are diagnosed at birth. At 13, Claire did something quite out of character for a 13-year-old and founded a non-profit. Her organization called Claire’s Place Foundation is a non-profit designed to emotionally support children and families affected by CF. Claire, now 20, has taken her non-profit to the next level with a YouTube channel called The Clarity Project. Her channel leverages a healthy dose of humor and is geared towards adolescents and helping them to cope with the unique challenges they face. Having recently been an adolescent with CF, Claire is in a unique position to impact this age group. She understands well that there are often barriers between people who are sick and those who are not. Her goal is to show teens that they are people who are a valuable part of the world in which we all live. She aims to be transparent with them so that they can see and appreciate all the parts of their lives and understand that they are not alone. Claire has won awards such as the Fox Teen Choice Awards in 2015 and the Gloria Barron Prize for Young Heroes. Her organization also won the “Small Nonprofit of the Year” award in the Los Angeles Business Journal.
A 13-year-old published author
Last but certainly not least is Travis Flores. Diagnosed at just 4 months old, the California native and his family soon relocated to Ohio where they had better access to CF specialists. As a make a wish recipient through the Make-A-Wish-Foundation, Travis published a book called The Spider Who Never Gave Up, at just 13 years of age. When he was a kid, and just 8-years-old, he started writing. His hope was that he could write something that would help other kids like the ones he was meeting in the hospital feel less afraid with the process of hospitalization and CF. He donated the money he made from his book back to the Make-A-Wish-Foundation. In 2015 Travis received a double lung transplant.
The inspiring success stories of these young CF patients show us that we can all overcome adversity in our lives. These are the people who children with CF look up to and think I can be that. When they read about other people with CF accomplishing great things they realize that they can too. This type of motivation can be incredibly important in helping people continue to fight the disease even when it seems impossible.