Jewish mum asks for community help to fight rare kidney disease

A Jewish mother-of-two from Finchley with a rare kidney disease is asking the Jewish community to get behind a fundraising effort to help others in her situation.

Nancy Payman, 36, has organised a sponsored park walk at the end of September to raise money for research by two leading London hospitals after doctors who took a risk with her treatment found it worked. They are now seeking to understand how.

The speech writer, whose children are aged five and two, was 15 months old when she was first diagnosed with FSGS Nephrotic Syndrome, a life-threatening disease whereby the immune system attacks the kidneys, causing permanent damage.

Doctors at Great Ormond Street Hospital treated her for several years, with chemotherapy among the treatments, to suppress her immune system. She was facing her first transplant aged five, until doctors decided to try something new.

“All the other drugs hadn’t worked,” she said this week. “Then my consultant had a hunch to try me on a chemotherapy drug called Vincristine, originating from the beautiful Madagascan Periwinkle flower. That was the turning point. It became my miracle drug and sustained me in remission for many years.”

Among those to have had FSGS was New Zealand rugby player Jonah Lomu, who died aged 40, after a transplant failed. Most sufferers have multiple transplants, but the immune system in many cases simply attacks the new kidneys.

Dr Ruth Pepper, who was described as “the most amazing doctor” by Payman, said: “We actually treated her with a very unusual drug which worked for her as a child – but it is a drug that we certainly never prescribe in adults. This is the only time we ever used this drug in the renal unit at the Royal Free.

“However, we knew it worked for her as a child, so we took a bit of a risk but luckily she responded again to treatment and having been very unwell, she is now doing very well and is back in remission.”

Payman said Pepper, who is Jewish, and fellow Royal Free consultant Dr Aine Burns “took a big risk and managed to convince the hospital into trying Vincristine again, thankfully it didn’t fail me”. She added: “It has allowed me to have children, because if I’d been on the chemo drugs I wouldn’t have been able to.”

There is currently no cure for the chronic condition and patients respond differently to different treatments, so clinicians are now profiling Nancy’s genetic make-up to understand why it worked on her and not others. Pepper said the disease “is not well understood and usually leads to kidney failure needing dialysis or a transplant”.

In fundraising, the New North London shul member is following in the footsteps of her parents, who raised a “huge” amount for Great Ormond Street, and she has now organised a sponsored walk around Richmond Park on 30 September.

“It’s a way of saying thank-you,” she said. “I’ll be walking with my dog Coco, who is becoming a therapy dog, and I would love it if the Jewish community supported us, either by joining us on the walk or by pledging money.”

People can pledge support by visiting: https://www.justgiving.com/fundraising/walking-for-kidneys