A Leicester man is calling for urgent reform after a new report from Kidney Research UK reveals the devastating impact of rare kidney diseases, including delayed diagnoses, outdated treatments and significant disruption to daily life.
Adam Musa, 38, from Leicester, is sharing his personal journey to shine a spotlight on the struggles faced by thousands of people with rare kidney conditions. Diagnosed with congenital renal dysplasia in 2009 following a medical emergency, Adam’s life changed overnight. He received a kidney transplant from his father, only for it to fail nine years later — forcing him back onto dialysis for six more years until a second transplant in 2024.
Picture: Adam Musa
His story is featured in Collectively Common: The Devastating Impact of Rare Kidney Diseases in the UK, a new report from Kidney Research UK that highlights how rare kidney conditions disrupt education, employment and family life, while placing immense strain on NHS resources.
“I went from being healthy and active to intensive care and dialysis almost overnight,” said Adam. “I later learned I’d been born with congenital renal dysplasia, but it had gone undetected until my kidneys failed. Since then, I’ve endured years of dialysis, two transplants and countless hospital visits. It’s taken a huge toll on me and my family, not just physically but financially too. I can’t help but think that if my condition had been picked up earlier, my journey could have been very different.”
Adam is now lending his voice to Kidney Research UK’s call for the government to take immediate steps to improve outcomes for patients like him. The charity is urging investment in faster diagnosis, inclusion of children in clinical trials, and greater funding for research and services.
Rare kidney diseases affect over 160,000 people in the UK. While individually uncommon, more than 150 different rare kidney conditions exist — and together they drive over 25% of all kidney dialysis and transplant demand. For children, the impact is particularly stark: more than 60% of those reaching kidney failure suffer from a rare condition, with many missing over 100 days of school each year.
Dialysis alone costs the NHS £34,000 per patient per year — an estimated £263 million annually for patients with rare kidney conditions.
Sandra Currie OBE, chief executive of Kidney Research UK, said:
“Adam’s story is sadly not unique. Children are growing up with treatments that haven’t changed in decades, and adults are being failed by a system already at breaking point. Without urgent action on diagnosis, trials and investment, more families like Adam’s will face a lifetime of disruption and preventable harm.”
The report offers a clear roadmap for change, calling for faster and more accurate diagnosis, smoother transitions from child to adult care, and national patient registries to better connect families with research.
Adam remains hopeful that with the right political will and funding, future patients will not have to face the same long and difficult road.
“It shouldn’t take a crisis to find out you’ve been living with a rare disease your whole life,” he said. “We need change — and we need it now.”
