The adventurer who confronted his fears to raise awareness of Alport syndrome
Filmmaker Sam Clarke, from Reading, was born with Alport syndrome, a rare genetic disorder affecting the kidney’s filtration system. It is the second most common cause of inherited chronic kidney disease after polycystic kidney disease. The condition can also cause hearing loss and eyesight problems in some people.
When Sam was ten years old, a doctor told him that having Alport syndrome was akin to living with a “time bomb” – ill-chosen words which Sam says had a devastating effect on his young life.
“Those words – ‘time bomb’ – became my focus and I immediately began to catastrophise. I thought that when my kidneys failed, my life would be over,” says Sam, whose uncle on his mother’s side of the family also has Alport syndrome. “From then on, I was constantly thinking, ‘Why me?’
“At school I used humour to cover up my fears, but the anxiety that was flowing underneath was intense. When I was offered hearing aids at 15, I refused to wear them as I didn’t want to be bullied. Not even my close friends knew I had kidney disease and later in life I kept it quiet from my bosses at work.”
A life-changing adventure
But in 2019, Sam decided he’d had enough of living in fear and in May that year he set off on a life-changing adventure. His aim was to cycle 6,000 miles across Europe, skydiving in each country he passed through, with a goal of raising £20k for charity.
“The year before, I was very ill mentally. I was in a dark place and struggling,” says Sam, 35. “Finally I said, ‘I can’t continue like this. I need to know more people with Alport syndrome.’
“I got in touch with Alport UK and Susie Gear, who runs the charity, helped dig me out of a hole. I found myself inspired by what the charity was doing and that, combined with covering inspirational stories in my work as a documentary maker, led me to my big cycling adventure.”
My Only Antidote documentary
Sam is now putting the finishing touches to My Only Antidote, the documentary he made about his trip, and is on a mission to crowdfund £42k to bring the project to completion.
He hopes that the 90-minute film, which is “about embracing fear and accepting vulnerability”, will be shown at film festivals across the world and eventually be picked up by a streaming service, so it can reach the greatest number of people possible.
“I really hope the film can not only spread awareness of Alport syndrome, but also offer a new perspective and acceptance of fear and vulnerability,” says Sam. “If it also inspires anyone to get out and make the most of life, that would be a massive bonus.”
The film features a pivotal moment which results in Sam finally releasing years of pent-up negative emotion stemming from his anxieties surrounding Alport syndrome.
“Instead of seeing myself as a victim, I accepted my vulnerability and it took a huge weight off my shoulders,” says Sam. “I suddenly found gratitude amongst the chaos.”
Sam’s epic adventure was derailed by the arrival of the Covid pandemic and he was forced to fly home from Albania in March 2020 as the world went into lockdown. But, later that year, he completed the final 1140 miles of his journey by cycling from Land's End to John O'Groats during the first easing of the UK lockdown restrictions, finishing in October 2020.
He also broke his fundraising target, raising £26k for the Don’t Wait Fund, which he thought up and created alongside Alport UK, because he wanted to encourage and support anyone affected by Alport syndrome to live an active lifestyle. Alport UK facilitated the fund via their website.
Kidney function decline
Despite being told his journey across Europe would accelerate his kidneys’ decline, Sam’s health in fact remained robust throughout his trip.
“I set off in the knowledge that my kidneys could fail within 12 months, but they remained stable,” says Sam, who, with help from Alport UK, stopped off at various cities for kidney check-ups along the way. “That gave me the confidence to keep going.”
However, earlier this year Sam, who has never been on dialysis, had to face the reality that his kidneys were finally failing.
“After lockdown it just became a steady, slow decline and I realised I’d need a transplant this year,” he says. “My dad, an absolute legend, was found to be a match and on 22 September I had surgery.”
Helping to raise awareness of Alport syndrome
Despite the transplant being a success, Sam needed a further operation to clear a haematoma in one of the kidney’s arteries two days later. Thankfully he’s now recovering well, although he says his new kidney is still a little “sleepy”. His father Mike, 67, has made an excellent recovery.
As well as raising awareness of Alport syndrome with his documentary, Sam is also excited about the recent launch of the Stoneygate and Kidney Research UK Alport Research Hub, which was created thanks to £2.55m investment from the Stoneygate Trust in partnership with Kidney Research UK.
Based at the Wellcome Trust Centre for Cell-Matrix Research in Manchester, the Hub provides a virtual collaborative centre for international research into Alport syndrome.
“I think it’s an amazing initiative and very reassuring,” says Sam, who attended the Hub’s launch last year. “Researchers can all get together and share information, which in turn should help improve the lives of so many Alport patients. Knowledge really is power.”
For more information on Sam’s documentary, My Only Antidote, visit: https://www.youtube.com/watch?v=fMrtfUV8GOI
Help Sam raise completion funding for the film by donating to his crowdfunding campaign: https://www.crowdfunder.co.uk/p/my-only-antidote-film
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