Fitness influencers Sophie Holmes and Ben Mudge have challenged preconceptions their whole lives.- Both of them have
cystic fibrosis , a genetic disorder that causes a build-up of thick mucus in the body, particularly affecting the lungs and digestive system. - CF is a terminal disease, so it has long been a belief that those with it will live a much shorter life. But the disease affects every person differently and improved treatments over the last few years mean people are living longer.
- Holmes and Mudge have been fighting their whole lives to push expectations, and they use their illness to fuel them rather than hold them back.
- Through their Instagram pages and websites, they are motivating others with CF to believe in their possibilities too.
- Visit Insider's homepage for more stories.
30 years ago, almost to the day, Ben Mudge was diagnosed with cystic fibrosis. He was only a few hours old when doctors realized he was having digestive problems indicative of the disease which thickens mucus in the body so that it's more like "wallpaper paste" than water.
"My parents were told the doom and gloom of what cystic fibrosis meant back in 1990, which was, he's probably not going to live very long," Mudge told Insider. "It's going to be pretty restricted, there'll be oxygen tanks in every room to keep him alive. It was pretty depressing and very tough for my parents."
Every case of cystic fibrosis is different, but the general consensus in the population is that it's a terminal disease associated with a much-shortened lifespan, as the average life expectancy for someone with CF is much shorter at about 33 years.
However, many exceed that expectation, and new developing treatments mean people are living longer than ever.
Ben's story: 'In my opinion, I'm not doing anything out of the ordinary'
Mudge and his parents never felt defeated by his diagnosis. He thinks he grew up with the perfect role models — his mother is a nurse and his father has a military background — for wellbeing and exercise to be such important drivers in his life from a young age.
Despite two excruciating bowel obstructions, Mudge was a healthy child growing up. He consistently measured as having 100% lung function in spirometer tests, which determine how you're doing compared to the average person your age, and has been an avid gym-goer since school.
A chest infection caught on a trip to Florida when he was 18, worsened by disrupted sleep on an airbed, was the first time he realized how severe his illness could be. He had to face his lung function score dropping to 66% and was admitted to hospital for three weeks.
"That drop was massive and I really couldn't do simple everyday tasks," Mudge said. "Even thinking about it was really tiring me."
Little by little, Mudge got his score back to 100% by walking to the corner shop where he worked. He fought back again when he was knocked down by another chest infection a couple of years later.
"I was told there's a fairly likely chance that I'd never be able to get back up to a hundred percent because of the damage done by the infection in my lungs," he said. "But I knew I could do it because I knew that I didn't feel great when I was in the hospital, and I knew I could get fitter, and I knew I could get healthier, and once I got back into the routine, I could get back up to there."
As of six months ago, Mudge's lung function score is 101%. He is now a personal trainer and influencer with 114,000 followers challenging the perception that having CF means being unhealthy.
Helping others is something he will never take for granted
Mudge predominantly trains with other people who have CF to help them improve their lung function and general fitness through personal training and his website CF Strength. People with CF cannot meet in person because there's too high a risk of infecting each other, so he does all his sessions online.
As for the social media thing, he never really planned it. He just started it up to help his business as a coach, he never thought he'd become a source for information about CF.
"When I did speak about my CF, people with CF were very inspired and motivated by me just doing what everyone else around my was doing," he said. "It's always felt very strange to me, the accolades or the praise I get, because in my opinion, I'm not doing anything out of the ordinary.
"If you were walking to the gym and didn't know who I was, and didn't know I had cystic fibrosis, you probably wouldn't single me out as doing anything spectacular compared to everyone else in there."
Mudge never believed just sharing his life would lead to people telling him he'd changed theirs. Or that he would hear from parents telling him their children are taking their tablets and using their nebulizers because they want to be like him.
"It's so symbiotic because it keeps me going 'cause I'm keeping them keep going," he said. "It's incredibly moving and I've been brought to tears on numerous occasions from the messages. It's something I'll never get used to."
Sophie's story: 'Little did they know that I was, and still am, very determined'
Sophie Holmes is also a fitness influencer and coach who lives with CF. She wasn't diagnosed straight away and it was only when her parents' friend — a CF nurse — noticed she had the characteristic salty skin that she was given the diagnosis.
"They basically felt that it was like bringing up their child to die because they got told she definitely won't make her 16th birthday, she's going to be very sick, and spend a lot of time in hospitals," Holmes told Insider. "But little did they know that I was, and still am, very determined."
Like Mudge, Holmes showed how she could defy the odds. Growing up, her parents always allowed her to do everything her sisters did, even if doctors advised against it. She rode horses, spent a lot of time outside, and was beating all her friends at school sports.
She also got her lung function back up to 100%, but it dropped by half to 50% after going through a rough period of her personal life and career. Her doctor sat at the end of her hospital bed at the time and told her she would probably have to accept the reality that CF had won and she had two years to live.
"Being 19 and being told that is quite scary," Holmes said. "But luckily because of my strong mindset and the way I perceive things, I didn't actually believe them."
'I have such a unique outlook on life because of the CF'
It was after this that Holmes decided to train in the fitness industry to understand how her body worked. She's now 28 and has always been the kind of person to go against what people say she can't do.
She has climbed Mount Kilimanjaro, run a hundred-kilometre ultra-marathon, and paddle boarded 80 miles from The Bahamas to Florida, among many other tough endurance achievements. And she did it all while doctors were warning her she could die.
"I have such a unique outlook on life because of the CF," she said. "I have the courage to live life on my own terms and push myself because I've always been told that my life may be shorter or I won't be able to."
When returning from Tanzania, Holmes put a note on her doctor's desk that advised him not to take people's hope away, "because if you take that away, you could take their power away."
Since then, Holmes has never stopped challenging herself.
"We all have limited time on this earth and I'm just lucky enough to have been told that a lot younger," she said. "Everyone in their life has to face a form of adversity, and how you react to it determines how your life is."
Holmes set up her Instagram, which now has about 40,000 followers, four years ago. She hopes anyone who is facing any kind of challenge sees it as motivation.
"If I can just help one person have the courage to live life on their terms or face the difficulties they're in, and overcome them to then build the life that they want to want to live, I feel like it would make me the happiest person," she said.
A lung transplant isn't the holy grail
Both Mudge and Holmes have never had a lung transplant, and neither of them has any desire to go in for one at all. To get on the list, someone's lung function has to drop to 30%, which they have never experienced.
"The obvious solution to people that don't know about the transplant journey is that if you have a lung transplant you'll be cured," said Holmes. "But it doesn't really work like that."
Right now, she takes about 80 tablets a day for her CF, but people with an organ transplant probably take three times the amount so their body doesn't reject it.
"It's one of those things where you want to try and avoid it for as long as possible, or at all," she said.
One man who goes to the same hospital as her is 62 years old and has never had a transplant either.
"He's living like a normal 62-year-old," she said. "This is what I'm trying to show the new moms or the young kids: If you just work hard, focus on it, the possibility is there. You just need to figure out what your body works best with and try your best with it."
Mudge said it's a huge misconception that people with CF are immune-compromised. They only become so if they have to go in for a transplant because of all the anti-rejection drugs they have to take.
"My goal is to keep every organ in my body," he said. "Realistically, I'd like to be able to donate my organs whenever I do go down. I want to be able to give whatever I can to someone if I can. So yeah, keeping my own lungs is a big, big goal of mine."
Rather than seeing new lungs as an ambition, Mudge fears it, and uses that as motivation "to do what I have to do on the days that I don't want to do them."
"I definitely don't want to go down that road," he said.
Seeing lung transplants as the holy grail of treatments is wrapped in with how people with CF are generally perceived. They are seen as delicate and need to be wrapped in cotton wool, Mudge said, which is an illusion he's fighting every day.
"I don't think anyone's ever met me and thought, 'Oh he has cystic fibrosis,'" he said. "When they look at me physically, they don't go, 'Oh he's got a terminal illness.' That's the last thing I want people to think. People can't treat me differently because of my CF if they don't know about it."
'CF is a fire ... And the way you perceive the fire determines whether it will work for you or work against you'
Holmes said she hopes she's made her parents proud that "a vulnerable baby has now grown into a force to be reckoned with." She also hopes people go away from her page knowing that the possibilities for their lives are endless, and they should never give up, even if that goes against what they've been told.
"If you want to achieve something, just go with it with your whole heart and commit and just see what happens," she said. "I'm a firm believer that if you say you want to achieve something, go and do it because there's no better feeling than that."
"I'm just doing all I can to take care of myself and sit down for myself," he said. "There's a myriad of things that are going to affect someone's ability to perform a task. But I'm not going to let cystic fibrosis dictate how I do mine."
Mudge said his friends all call him "Captain Positive," and hopes that people looking at his page will get the sense of that, as well as the message that life is not promised, and you've got to make the most of it while you're around.
"CF is a fire," he said. "And obviously fire can be an extremely destructive force if not managed correctly."
But it can also be used as a source of energy, he said, like when you say someone has "fire in their belly."
"It means they're motivated and they're ready to go," he said. "I think the way you perceive the fire determines whether it will work for you or work against you."
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