A man who has suffered with a rare condition that turns his urine blue, purple or black since he was born has spoken about his lifelong mystery - only solved when he got a diagnosis aged 53. Tony 65, from Bridgend in Wales has detailed his condition as part of a new national campaign, called This Is Rare.
Tony has Alkaptonuria (AKU), also known as black bone or black urine disease. It causes severe, early-onset osteoarthritis. Despite showing symptoms since he was a baby, including purple/blue-ish colour urine in his nappies, Tony wasn’t diagnosed with AKU until he was 53 years old.
A combination of missed opportunities and lack of AKU awareness prevented him from receiving an earlier diagnosis. Tony has found living with AKU challenge at times. Symptoms vary they and have significantly impacted Tony’s professional life.
