Raising awareness of Alkaptonuria (AKU) is at the heart of what we do at the AKU Society. As a rare condition, AKU is often misunderstood or overlooked. This lack of awareness can delay diagnosis, limit support, and leave patients feeling isolated. That is why patient voices are so powerful: those living with the condition every day understand its challenges better than anyone else. When patients share their stories, they not only help others with AKU feel less alone but also educate wider communities about the realities of living with a rare disease.
One such inspiring voice is Chris Jenkins, who has found a unique way to combine his lifelong passion for football with his determination to raise awareness of AKU in South Wales.
Chris, from Newport, is under the care of Professor Duncan Cole at the University Hospital of Wales, Cardiff. AKU has also touched his family in many ways. “I’ve got two brothers – Jason, who has AKU too, and David, who is the youngest brother. He hasn’t got AKU,” he explains. He adds, “I’ve got a son who carries the AKU gene, and his name is Dylan.”
Despite the challenges of living with AKU, Chris has channelled his energy into grassroots football – the community level of the game played by local clubs, schools, and amateur teams. “I’ve been bringing awareness of AKU in South Wales through sponsorship of football players, playing at grassroots football,” he says. He currently sponsors three players across different leagues, including Maddison Perrott, who plays for Cardiff City Ladies and represents Wales at international level.
Alongside sponsorship, Chris is also passionate about showcasing the achievements of local players and teams. “I do filming of local teams playing in different leagues, then place on social media the scoreline, photos and videos of the match,” he explains.
Football is a sport that thrives on community. Local matches draw families, friends, and supporters together, creating spaces where stories can be shared and connections built. By linking AKU awareness with football, Chris is reaching people who might never otherwise hear about the condition. The visibility of players he supports, and the excitement of local games, make football an ideal way to bring AKU into the spotlight.
At the AKU Society, we know that patient-led awareness is vital. While we run campaigns, support research, and connect families around the world, it is the stories of people like Chris that bring AKU to life. His efforts show that awareness does not only happen in hospitals or conferences – it can grow in stadiums, clubhouses, and community pitches, carried forward by the passion of those who know the condition best. We are proud to share Chris’s story and celebrate his ongoing commitment to raising awareness. Through football, he is helping to make AKU visible in places it has never been before.
You can follow Chris on X/Twitter to see his AKU awareness work and how he combines it with his love of grassroots football.
