From feeling 'terrible' to 'empowered' in drug trial

TEST PATIENT JAMES HAILS POTENTIAL NEW TREATMENT

- By SAM VOLPE

WHEN James Mason was diagnosed with an “ultra-rare” kidney disease aged just 40, he was told the worst case scenario was kidney failure within a decade. He was also told there was nothing that could be done.

Now though, new research led by a Newcastle expert has found a potential treatment that could change the 51-year-old’s life. James, who is from the southwest of England, has been part of a leading clinical trial, and said the impact had been incredible.

James has a complex disease called Complement 3 glomerulopathy (C3G) which happens when part of the immune system does not work correctly. This involves an immune “overreaction” that damages the body’s own kidneys.

James said: “It took a long time to diagnose as it is a rare disease, but to be told after diagnosis that the worst-case scenario was kidney failure in around 10 years and there was nothing that could be done about it was a real shock.”

James’ situation led to very high levels of protein in his urine, which alarmed those treating him and meant he often required short-notice treatment in hospital. Going through extensive medication trials had a huge impact on his day-to-day life.