# Singapore teenager’s Resilience Shines Through Rare Kidney Disease and Self-Administered Dialysis
A 16-year-old in Singapore is defying the odds, skillfully managing his life with a rare genetic kidney disease that necessitated the removal of both kidneys at age 13. Au Wan Rong now performs daily peritoneal dialysis at home, a testament too his courage and the advancements in treating kidney failure.
Wan Rong’s journey began in childhood, with the initial signs of illness appearing when he was just seven years old.His parents first noticed foamy urine and significant facial swelling, prompting an immediate visit to the emergency room at KK Women’s and Children’s Hospital. After a series of tests, doctors diagnosed him with a serious kidney disease, though the underlying cause remained elusive for some time. Initial treatment with steroids proved ineffective, and his condition continued to deteriorate.
A year later, Wan Rong was transferred to the National university hospital, which at the time, housed the only dedicated chronic dialysis service for children in the country. “The drug became toxic when his body didn’t respond to it and his kidneys deteriorated rapidly,” explained a senior consultant at the hospital. Genetic testing revealed the root of Wan Rong’s illness: a rare TRPC6 mutation. Discovered in 2005, the mutation’s exact prevalence remains unknown, but it’s linked to progressive kidney disease.
The TRPC6 protein plays a crucial role in filtering waste from the blood. According to medical experts, the mutation appears to enhance the protein’s function, causing the kidney’s filtering units to leak protein, leading to swelling, fatigue, and ultimately, kidney failure.
Did you know?-Peritoneal dialysis can be performed at home, offering patients greater versatility and independence compared to traditional hemodialysis, which requires hospital visits.
By age 13, Wan Rong’s condition had become critical.He experienced excruciating leg pain and was hospitalized. Ultimately, both kidneys were removed due to waste buildup and infection. Following the surgery, he battled severe headaches caused by fluctuating blood pressure, which were managed with medication.
Living without kidneys requires a highly restrictive diet and meticulous adherence to a kidney-friendly plan to manage dialysis. wan Rong must severely limit his fluid intake to prevent fluid overload, high blood pressure, and heart failure. Despite these challenges,he continued to maintain a semblance of normalcy,even managing to play with his friends.
What sets Wan Rong’s case apart is his ability to independently administer his peritoneal dialysis. This home treatment utilizes the stomach lining as a natural filter, removing waste and fluid from the blood.The process involves carefully removing old fluid, infusing a new solution, and allowing it to collect waste before being drained. “He is the youngest patient I have treated who did this on his own and did it cleanly without infection,” stated Associate Professor Ng kar Hui, a senior consultant specializing in pediatric nephrology, dialysis, and kidney transplantation. The procedure demands a strict sterile approach, including thorough hand washing and careful cleaning.
Pro tip:-Maintaining strict hygiene during peritoneal dialysis is crucial to prevent infection. Thorough handwashing and a sterile technique are essential for safe home treatment.
Why is Wan Rong’s case significant? It highlights the resilience of young people facing severe health challenges and the potential for accomplished self-management of chronic conditions with proper training and support. Who is central to this story? Au Wan Rong, a 16-year-old Singaporean teenager, and the medical team at National University Hospital. What happened? Wan rong, diagnosed with a rare TRPC6 mutation leading to kidney failure, underwent bilateral nephrectomy at age 13 and now independently manages his health through daily home peritoneal dialysis. How did it end? Wan Rong continues to thrive, managing his dialysis independently and maintaining a relatively normal life, demonstrating the success of advanced medical care and his own determination. Ongoing research into TRPC6 mutations and improved dialysis techniques offer hope for future treatments and potentially a cure.
