The diagnosis
Katie Brown is 38 and lives with autosomal recessive Alport syndrome, a rare inherited form of Alport.
Katie was just six years old when she was diagnosed. She had started losing her hearing, and one of her kidneys had a hole in it. At the time, genetic testing wasn’t available, so her consultant sent her kidney biopsy to the United States, where it was matched with another child with the same symptoms.
The dialysis
Treatment with Ramipril helped slow the progression of her kidney disease for many years, keeping her kidney function stable at around 25%.
But in her early 30s, Katie needed home dialysis while continuing to work full-time as a teacher and raise her daughter.
The transplant
Eight months after starting dialysis, in June 2022, everything changed. Katie received a life-changing kidney transplant from a living donor – the fiancée of her gym instructor.
Today, Katie says:
“The transplant saved my life. I wouldn’t be here talking to you right now if I hadn’t had it.”
During the COVID-19 pandemic, Katie discovered Alport UK through Facebook.
“Alport is a very lonely disease because it’s so rare. I didn’t know anybody else with Alport for more than 30 years. Finding Alport UK meant I made so many friends through the charity.”
The British Transplant Games
This week, Katie is taking part in the 2026 British Transplant Games, representing the Derby Royal Hospital’s renal team. Katie will be playing in the football tournament and running a 5K race.
For Katie, the Games are about much more than sport.
“The Transplant Games represent normality for people like us. Having an illness takes away normal opportunities from people, and the Games give some of that back.”
Everyone at Alport UK is cheering you on, Katie. Good luck! 💜
If this story has inspired you
If Katie’s story has inspired you, please consider joining the NHS Organ Donor Register and talking to your loved ones about your decision. One donor can save lives.
And if you’d like to help ensure that nobody living with Alport has to face the condition alone, please consider making a donation at alportuk.org/donate. Every donation helps us connect people, provide trusted information and build a stronger community.