Virtual exhibition highlights resilience of people living with kidney disease

An exhibition that highlights the experiences of people in the UK living with chronic kidney disease has been launched online.

Survivors: Life Unfiltered features portrait photography that captures themes of survival against the odds, great resilience and learning to live for the moment, which organisers said “seem even more pertinent given the current challenges of the pandemic”. Thursday (11 March) is World Kidney Day.

Richard Booth, an award-winning photographer and official Olympic photographic artist, and Maddy Warren, a campaigner and kidney patient, joined forces to highlight the “strength, vulnerability and resilience” of those who are affected by Chronic Kidney Disease (CKD). 

The pair said: “We devised the project through a shared passion and drive to raise awareness of how kidney disease affects people and to highlight powerful human stories.

“Our exhibition portrays the strength, vulnerability and resilience of those who are affected by CKD, and shines a light on some of the challenges they face by contrasting their outward facing daily lives with the realities of their condition.”

The exhibition, which features kidney patients aged from two to 78, includes Andy Cole, former England footballer and kidney transplant recipient. It shows two images of each subject to represent the two sides to living with an invisible yet life limiting condition; the outward positive face that people often share with the world and the inner hidden life, in which people cope with fears, mental challenges and the vast time drain and ongoing burden of treatment.

It also includes their written experiences of having CKD, covering topics such as facing mortality, mental health, body image, gratitude, survivor’s guilt, silver linings and reconciling with a ‘new normal’.

The organisers said the pandemic has made the exhibition more relevant. They said: “It became rapidly apparent at the start of the pandemic that many people in intensive care with Covid-19 also developed Acute Kidney Injury, requiring life-sustaining dialysis. 

“The stories and messages of our exhibition have now taken on a heightened meaning and relevance since society has faced the most challenging health emergency in a century.”

Originally planned to launch in March 2020 followed by a national tour, the exhibition has become virtual until art galleries are allowed to re-open after lockdown. The introduction to the virtual tour can be found here.

‘I try to live well with my illness’: three people’s stories

Maddy Warren

Maddy Warren has been on dialysis for 21 years since she went into kidney failure when she was 14.  Since then the so-called ‘Queen of Dialysis’ has become a campaigner, skydiver, marathon runner and TEDx speaker.

She said: “I call my machine my Dalek or the Big Blue Dinosaur, supported by some amazing healthcare professionals and engineers from Guy’s Hospital, so I can live my life to the full.

“I have spent over two decades so far relying on a machine to keep me alive as I can’t have a kidney transplant. But my greatest fear has never been that I might die. The thought of being trapped in a life controlled by my illness, mapped out by symptoms, limitations and treatment scares me far more than death. 

“Yet surprisingly, through gaining absolute control by dialysing myself at home, and by staying relentlessly positive and mentally focused, I have become liberated by my condition. It has taught me more about humanity, perspective, joy and the importance of grabbing every single moment, than anything else possibly could. I draw power from knowing that while our existence is fragile we can still be strong, an insight which drives me to pursue my passions and face my fears. 

“My career choices have also been shaped by this as I realised I wanted to do something meaningful and I feel privileged to be able to dedicate my work now to improving kidney patient care, advocating for change and raising awareness to help more people have positive experiences like mine.”

Andy Cole

Cole first noticed not feeling well when he was on his way back from Vietnam. He says his 2015 diagnosis with kidney disease “totally took the wind out of [his] sails”.

He has launched the Andy Cole Fund, in partnership with Kidney Research UK, to raise funds for research that focuses on improving transplantation and research that will improve the health and wellbeing of people living with kidney disease.

Cole said: “I didn’t believe how ill I really was for quite a long time – my attitude has always been to get on with things, don’t complain and push forward. Since my transplant so many people ask ‘are you better now?’ as they don’t understand kidneys, especially as I look fine on the outside. 

“It’s such an intrusive illness. I am not saying the physical side is easy but the mental side is awful – it’s absolutely a mental game and I constantly questioning myself over the smallest things. I doubt myself where I used to feel very self-confident. But I am driven to try and understand the illness as best I can, learn to live well with it and do what I can to help others so maybe they won’t have to go through this in future.”

Rudina Hatipi

Since being photographed for the project, Hatipi has had some good news. She has now received a kidney transplant donated by her mother.

She said: “My work as a professional dancer is very physically demanding and I have had to learn how to live with the debilitating symptoms of my declining kidney function.

“The fatigue can be so extreme but I try to manage my energy levels, making sure I have a nap to help get me through long days of rehearsals.

“Fortunately I have had some very supportive employers recently who I could be completely honest with about my needs. I am a very positive, passionate person and dancing has kept me motivated to stay well.”

Find out more at www.survivorslifeunfiltered.co.uk
All images: Richard Booth