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Kidney disease ends here.

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New vice chair Ben humbled by appointment

23 September 2021

Growing up with kidney disease, our newly appointed vice chair of trustees is in a good position to know how it feels to live with compromised health. 

Ben Digby, 36, was diagnosed with minimal change nephrotic syndrome at 20 months old, an auto immune condition which attacks the kidneys. 

After a childhood spent in and out of hospital, Ben was discharged with a clean bill of health at the age of 22, so is able to use his lived experience to help others. 

Ben Digby running the london marathon
Ben taking part in the London Marathon for the charity in 2011

“Being appointed vice chair of Kidney Research UK is a humbling and very special moment for me, and for my family,” says Ben. “I’m looking forward to working with the fantastic staff and trustees, to keep working towards our mission of lives free from kidney disease.”

“From the first moment I got involved with the charity I’ve seen the passion people have who support its work; from fundraisers, to storytellers, staff and trustees. The commitment – especially through the pandemic, which has been tough for all charities – is incredible.”

Ben, a public affairs professional for HSBC, began his involvement with Kidney Research UK on the lay advisory committee in 2014 and then joined the board of trustees in 2020. He will officially take over from outgoing vice chair David Prosser at the annual general meeting on 23 September.

Positive memories of paediatric care

Ben was diagnosed with his kidney condition in the mid-1980s when much less was known about minimal change nephrotic syndrome. “It must have been very frightening for my parents,” says Ben. “I didn’t really appreciate that until I became a parent myself earlier this year.”

For Ben though, hospital was a good experience. “I remember actually looking forward to going! The staff at Stoke Mandeville Hospital were amazing, I had my own room with a TV…and I’m told by Mum and Dad that I was on first name terms with all the doctors and nurses. They made it feel like second home, so no bad memories.”

Ben as a baby with his parents before being diagnosed
Baby Ben with his proud parents before his diagnosis.

Surrey-based Ben knows he is lucky. He was treated successfully with steroids and, for a short period when he was steroid-resistant, homeopathic medicine, and got through a series of relapses until he was discharged from hospital care at 22.

“It’s a difficult thing to admit as I know so many other people are living a much harder experience than mine, but I had mixed feelings when I was discharged. Of course it was a big relief, but my relationship with my kidneys had become such a big part of my identity – of what it meant to be me – that it also felt a bit like I was losing something. I needed to find a way of keeping the link.”

So, Ben decided to keep the kidney link by initially taking part in fundraisers like the Great North Run in 2007, then the London Marathon in 2011, raising around £3,000 for the charity.

Ben with wife Amy and daught Alba-Grace.
Ben with wife Amy and their new daughter Alba-Grace.

The personal touch

However, in his late 20s he decided he wanted to do more. He got in touch with Kidney Research UK chief executive Sandra Currie and met for coffee in London to talk about the options. “The fact that Sandra took the time to reply and then to meet me for an hour spoke volumes. She was passionate about the charity and interested in my experience. I knew immediately that she was someone I’d enjoy working with,” says Ben.

Since becoming a part of the charity Ben has been involved in various initiatives including the launch of the Andy Cole Fund in 2020, refreshing the organisation’s public affairs strategy, and supporting partnership across the renal community through the Kidney Charities Together (KCT) group.

It’s been a big year, with Ben becoming a father for the first time with the arrival of baby Alba-Grace at the end of May, as well as taking on this senior role with the charity. Ben says: “In so many ways it’s exciting times ahead.”

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