Specialist is support group's hero

Picture of gratitude: Dr Peter Nourse (second from left) with Gail (left), Colin and Danielle Daniels (front), members of the Cystinosis Support Group. Cystinosis sufferer Danielle presented one of her photographs to Nourse, who also received an award, held by Danielle, from the Cystinosis Support Group.

Gail Daniels could not heap enough praise on Dr Peter Nourse when the Cystinosis Support Group - which she started three months ago, after a gentle prod from Nourse - presented him with an award for service and compassion.

It's not that hard to grasp the reason for Daniels' lavish tributes. Her 16-year-old daughter Danielle suffers from a rare disease of the kidney known as cystinosis. After years of going from pillar to post, being passed from one hospital and doctor to the next, she finally found a patient ear and the relevant knowledge in Nourse. It was he who first diagnosed Danielle and suggested treatment. These days he also serves as medical advisor to the support group.

"It's nothing but a blessing to have a doctor who cares, who listens, and who empathises," said Daniels when the group made the award to Nourse, in collaboration with the international Cystinosis Foundation and the Western Cape Department of Health.

A paediatric nephrologist at Red Cross Children's Hospital with a joint appointment in UCT's Division of Paediatric Medicine, Nourse first came across cystinosis while doing a fellowship in the Netherlands a few years ago. But cystinosis appears to be but one of many rare diseases (only some 2 000 people across the globe have been diagnosed with cystinosis) that can afflict the kidney, he reports.

Cystinosis, specifically, is a genetic metabolic disease affecting mainly children, and causes the build-up of an amino acid, cystine, in various organs of the body, such as the kidneys, eyes, liver, muscles, pancreas, brain and white blood cells. Without proper treatment, children with cystinosis develop end-stage kidney failure before age 10.

Despite being singled out for acclaim, Nourse credits the teams he had been working with at Tygerberg - his previous home base - and Red Cross. And with the number of children in the Western Cape suffering from cystinosis seemingly increasing (based on the number of patients on dialysis and who have had transplants), there may well be grounds for a research project or two.

In turn, Nourse praised Daniels and the newfound Cystinosis Support Group, which has proved useful for patients, caregivers and the medical profession. "A parents' support group is important to doctors as well, especially because the family often know more than the doctors," said Nourse.