Meet Josh Llewellyn-Jones, a Cystic Fibrosis Hero

In many respects, Josh Llewellyn-Jones is a normal 30-year-old guy. As with many men his age, he’s into physical stamina and setting personal records. Referred to as a “fitness fanatic”, Josh has recently completed a successful 24-hour fitness challenge. The only competitor was Josh. And, he sponsored the event as a fundraiser for cystic fibrosis (CF).

Josh has CF, and wants to grow community awareness of this genetic condition, raise research funds for the U.K. charity Cystic Fibrosis Trust (CFT), and motivate others with CF to get fit through physical activity. (Cystic Fibrosis News Today/CFNT).

Amazingly, as the above article tells us, Josh’s 24-hour marathon only took 22 hours to complete and included “running 10 miles, rowing 20 miles, cycling 100 miles, 10 miles of cross training, swimming two miles, lifting 100 tons and completing a staggering 3,000 sit-ups, 1,000 press-ups, and 1,000 squats.”

Josh’s extraordinary routine

According to CFNT, Josh was in serious medical failure at birth, with a blocked intestine requiring immediate surgery. He was not expected to live. But, he beat the odds and has done more than survive. We are informed that doctors told his parents to “make sure he exercises.” Josh has evidently taken that advice to heart and trains up to 3 hours per day plus longer on weekends.

As Josh says, “I exercise to stay alive.” He speaks of how CF “takes our breath away,” but that “we CF Warriors give it our all.” Josh also shares that he never has the option to skip a day’s exercise; “You’ve just gotta knuckle down and do it.” (Facebook Live)

At age 21, Josh needed emergency surgery. It seems that during his original surgery, just after birth, his intestines had not been replaced correctly. For all 21 of his years, he’d been living with twisted intestines. Josh did not expect to survive the surgery, but survive he did (The Mirror).

During his lifetime, Josh has become a hero to the CF community. And he now offers information and emotional support via his Facebook pages to those with CF around the world.

In a Facebook Live video, Josh speaks of training his mind as well as his body- to keep a positive outlook as he faces each day. He tells us he is the youngest of 4 kids, and comes from a “sporty family.” His parents pushed him to start running; he’s also played rugby and soccer and has boxed, as well.

His fundraising efforts aren’t finished yet

Now aged 30, Josh’s recent fundraiser was one of many he has supported over the years. His efforts have so far raised more than £600,000 for CFT (That translates into almost $798,500 in U.S. funds). He is hopeful his most recent exercise marathon will raise another £100,000 (CFNT).

On Josh’s Facebook page, he speaks of his plans to continue the annual 24hrs4cf marathons and shares his reasons for doing so: “To show that impossible is just an opinion. To show that cystic fibrosis can be beaten. To change lives”.

People with CF have great difficulty in breathing, as the condition creates a voluminous amount of thick, sticky mucus in the lungs. This phlegm plugs the lungs and airways, and interferes with the exchange of air.

While exercise would seem to make the condition worse, the opposite is actually true.

The benefits exercise brings to CF

According to the University of Texas Health Science Center at Tyler, Texas, Rehabilitation Services (UTHSCT), exercise for those with CF actually helps to loosen lung congestion so it can be coughed up.

Cystic Fibrosis Canada (CFC) informs us that, while exercise isn’t able to increase lung function as measured via testing, it does slow deterioration of the lungs. With regular exercise, breathing can actually become easier.

Suggestions given are to find an exercise partner to increase the enjoyment and to hold you accountable to your decision to exercise per an established schedule. Also, guidelines are to start out slow with exercising and to gradually move up from 15-minute sessions.

CFC also tells us that exercise strengthens the whole body to include bones and muscles and even improves one’s mood.

In the CF Canada blog, we find their listing of the “Top Five Exercises That Improve Lung Function: Swimming, Running, Cycling, Weight Training, and Yoga.”

For more extreme athletes

For people like Josh, who prefer the extreme in physical endurance challenges, the U.K.’s charitable organization, Cystic Fibrosis Trust (CFT), offers these hardcore fundraising opportunities, meant to “test your mettle”:

• The Born Survivor Challenge - a 10 K muddy obstacle course to include slides down slimy hills
• Mount Kilimanjaro - a climb to the 1,000-meter top of this highest mountain in Africa (with training support provided)
• Ben Nevis Mountain - an uphill Scottish Highland trek to the mountain’s summit
• Great Strides 65 Ultra Marathon - a slow, 40-mile trek through various British terrains, with medals for all who complete the challenge within 10 hours.
• “Swim for Logan” - an annual event in honor of a young boy with CF

The CFT offers numerous other fundraising opportunities, as well. For October and November of this year, their calendar of events included ten various runs and walks, plus a 5K marathon and a trail trek.

Also as a fundraiser, Josh Llewellyn-Jones will be appearing at a public event in Cardiff to speak on “Beating Cystic Fibrosis.”

Along with Josh, a young Australian lady named Lauren Rowe has also recorded a video for Cystic Fibrosis News Today. While Josh’s presentation centered on His Health Tips, Lauren, in the first video of this series, shared her status as a six-year double-lung transplant survivor. Lauren’s YouTube channel is entitled GiftedLife. She, like Josh, was born with a bowel obstruction. During high school, she was a competitive gymnast. Lauren is a columnist for the CF Community Care magazine.

You can also visit Lauren on her Facebook page, whose motto is “Making chronic illness sexy since 1990.” Lauren also has a non-profit Twitter account called Gifted Life “to bring awareness to and help improve the lives of the chronically ill and organ and tissue donation.” In her quirky and somewhat off-color way, Lauren brings humor into the arena of CF.

Lauren, as does Josh, urges others to have and maintain an exercise program. Along these lines, the Cystic Fibrosis Foundation (CFF) offers the news that by “following a regular treatment routine that includes airway clearance, medication, a fitness plan and nutritional therapies, (one can) stay healthy and control symptoms.”

Josh encourages his fellow warriors by saying, “Never accept other people's opinions of your fate. You are in control of your own destiny.”

And, he concludes, “Now let's go out and show them what we're made of.”