Are there people who have been able to live full and meaningful lives despite having a diagnosis of cystic fibrosis? Realizing that many people and even famous people have lived full lives with cystic fibrosis can bring hope to those who are living with the disease, and their families, today.
Living With Cystic Fibrosis
Decades ago a cystic fibrosis (CF) diagnosis almost guaranteed a significantly shorter than average life expectancy. Children who were diagnosed were not expected to live long, and even just a few decades ago, it was rare for a child with CF to reach adulthood.
Today, thanks to modern medicine and an improved understanding of the disease, people with CF can lead full and meaningful lives. These famous people with cystic fibrosis have gone above and beyond their diagnoses to prove you can lead a full life with CF.
Lisa Bentley, born in 1968, is a Canadian triathlete. Diagnosed in her 20’s, she has surpassed the average life expectancy for those with CF and continues to live an extremely active life.
Bentley stresses the importance of strict adherence to treatment regimens and exercise for people living with CF. She has won 11 Ironman competitions and is one of the most successful triathletes. Rather than viewing her condition as a detriment, Bently wrote in a December 2016 blog, “adversity leads to greatness.”
As far as sharing the hope she has found with others she states, “every time I raced, I knew that my race served a higher purpose to give families hope that their children with CF could achieve similar things in life.” Thank you, Lisa, for bringing us hope.
James Fraser Brown
James Fraser Brown, born in 2006 is the son of British Prime Minister Gordon Brown, and was diagnosed with cystic fibrosis as a result of routine newborn screening tests. The diagnosis came as a surprise to the Browns, who did not know they were carriers of the disease.
His story is a testimony of the benefits of newborn screening for cystic fibrosis. With newborn screening, treatment can be started right away rather than waiting for signs and symptoms of cystic fibrosis such as malnutrition or respiratory distress.
The test currently done for cystic fibrosis on newborns is a screening test only. Further testing is needed for babies who test positive to determine whether or not they have cystic fibrosis.
Nathan Charles, born in 1989, is a successful rugby player from Australia. He was diagnosed with CF when he was a child. Doctors told Charles’s family that he wouldn’t live past his tenth birthday.
Almost two decades later, Charles plays the position of hooker and has won several championships. Nathan Charles is thought to be the first person with CF to play a contact sport professionally. Charles now serves as an ambassador for Cystic Fibrosis Australia.
Gunnar Esiason, born in 1991, is the son of former NFL football star Boomer Esiason and his wife Cheryl. Gunnar was diagnosed with cystic fibrosis when he was 2 years old. Interestingly, Boomer was involved in cystic fibrosis awareness and fundraising campaigns for several years before his son was diagnosed.
Boomer is the founder of the Boomer Esiason Foundation, a non-profit organization that seeks to promote CF research and improve the lives of people with cystic fibrosis. Gunnar is a graduate of Boston College and coaches high school football on Long Island, New York.
Travis Flores, born in 1991 and diagnosed with CF at the age of 4 months, wrote a children’s book called “The Spider Who Never Gave Up” with the help of the Make-A-Wish Foundation. He used part of the sales from his book to donate back to the Foundation as well as CF organizations and research.
He has raised over one million dollars for the Cystic Fibrosis Foundation and is a frequent speaker and spokesperson for the organization. He received a BA in acting from Marymount Manhattan College and a Master’s Degree from New York University (NYU) and currently resides in Los Angeles, California.
Nolan Gottlieb, a former basketball player and assistant basketball coach at Anderson University in South Carolina born in 1982, was diagnosed with cystic fibrosis when he was a child. He struggled with poor growth when he was a teen, but thrived after having a feeding tube placed in his stomach.
The 6’1” basketball player eventually nabbed a spot on Anderson’s varsity basketball team. Like many other athletes with cystic fibrosis, Gottlieb stresses the importance of physical activity for people with CF and hopes that his story will inspire other young people struggling with the disease to pursue their dreams.
Alice Martineau was a British pop singer. She graduated with a first-class degree from King’s College in London and had a relatively successful modeling and singing career. Martineau wrote and spoke often of her condition and her wait for a triple-transplant (heart, liver, and lung).
She passed away in 2003 from complications relating to CF when she was 30. Thankfully, even in the short time from her death until the present, significant progress has been made in the treatment of cystic fibrosis.
A Word From Get Meds Info
As is clear from learning of these survivors and thrivers of cystic fibrosis, many people are now able to live full and notable lives with the disease. There are many more people who, though not famous, are certainly living deeply meaningful lives thanks to the tremendous advances in treatment that have taken place over the last few decades.
Currently, the life expectancy for the disease is close to age 40, with hope that further improvements will increase this much further yet.
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