Before World Kidney Day, an exhibition of portraits of powerful human stories captures the resilience of those living with chronic diseases.
An exhibition highlighting the experiences of people in the UK living with chronic kidney disease has been launched online.
Survivors: unfiltered life features portrait photos that capture themes of survival through thick and thin, high resilience and learning to live in the moment, which organizers say “seem even more pertinent given the current challenges of the pandemic.” Thursday (March 11) is World Kidney Day.
Richard Booth, an award-winning photographer and official Olympic photographic artist, and Maddy Warren, an activist and kidney patient, joined forces to highlight the “strength, vulnerability and resilience” of those affected by chronic kidney disease (CKD).
The couple said: “We designed the project through a shared passion and drive to raise awareness of how kidney disease affects people and highlight powerful human stories.
“Our exhibition portrays the strength, vulnerability and resilience of people affected by CKD, and sheds light on some of the challenges they face in contrasting their everyday external life with the realities of their condition.”
The exhibit, which features kidney patients ages two to 78, includes Andy Cole, a former England footballer and kidney transplant recipient. It shows two images of each subject to represent the two sides of living with an invisible but limiting condition of life; the positive outer face that people often share with the world and the hidden inner life, in which people face fears, mental challenges, and the enormous waste of time and constant burden of treatment.
It also includes her written experiences of having CKD, covering topics such as coping with mortality, mental health, body image, gratitude, survivor guilt, silver lights, and reconciling with a ‘new normal’.
Organizers said the pandemic has made the exhibition more relevant. They said: “It quickly became apparent at the start of the pandemic that many people in intensive care with Covid-19 also developed acute kidney injury, requiring life-support dialysis.
“The stories and messages of our exhibition have now assumed greater 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 gone virtual until art galleries are allowed to reopen after closing. The introduction to the virtual tour can be found here.
‘I try to live well with my illness’: the stories of three people
Maddy Warren photographed by Richard Booth
Maddy Warren has been on dialysis for 21 years since she suffered kidney failure when she was 14 years old. Since then, the so-called ‘Queen of Dialysis’ has become an activist, parachutist, marathon runner and TEDx speaker.
She said: “I call my machine my Dalek or the Big Blue Dinosaur, with the support of amazing healthcare professionals and engineers at Guy’s Hospital, in order to live my life to the fullest.
“I have spent more than two decades relying on a machine to keep me alive since I cannot have a kidney transplant. But my biggest fear has never been the possibility of dying. The idea of being trapped in a life controlled by my illness, marked by symptoms, limitations, and treatment scares me far more than death.
“Yet surprisingly, by gaining absolute control by dialyzing at home and by staying relentlessly positive and mentally focused, my condition has set me free. It has taught me more about humanity, perspective, joy, and the importance of seizing every moment, than anything else. I draw power from knowing that although our existence is fragile, we can still be strong, a perception that prompts me to pursue my passions and face my fears.
“My career choices have also been shaped by this when I realized that I wanted to do something meaningful and I feel privileged to be able to dedicate my work now to improving the care of kidney patients, advocating for change and raising awareness to help more. people to have positive experiences. like mine.”
Andy Cole photographed by Richard Booth
Cole first noticed that he was not feeling well when he returned from Vietnam. He says his diagnosis of kidney disease in 2015 “took his breath away completely. [his] cloth”.
He has launched the Andy Cole Fund, in association with Kidney Research UK, to raise funds for research that focuses on improving transplantation and research that will improve the health and well-being of people living with kidney disease.
Cole said: “I didn’t believe how sick I was for a long time; my attitude has always been to get on with things, not complain and move on. Since my transplant, many people ask ‘are you better now?’ since they don’t understand the kidneys, especially since I look good on the outside.
“It is such an intrusive disease. I’m not saying the physical side is easy, but the mental side is horrible, it’s absolutely a mind game and I constantly question myself about the smallest things. I doubt myself where I used to feel very confident about myself. But I am driven to try to understand the disease as best I can, learn to live well with it, and do what I can to help others so they may not have to go through this in the future. “
Rudina Hatipi photographed by Richard Booth
Since she was photographed for the project, Hatipi has had good news. Now he has received a kidney transplant donated by his mother.
She said: “My job as a professional dancer is very physically demanding and I have had to learn to live with the debilitating symptoms of my declining kidney function.
“Fatigue can be so extreme, but I try to control my energy levels, making sure to take a nap to help me get through the long days of rehearsals.
“Fortunately, I have recently had some very supportive employers with whom I could be completely honest about my needs. I am a very positive and passionate person and dancing has kept me motivated to be well ”.
Find out more at www.survivorslifeunfiltered.co.uk
All images: Richard Booth