23 years on kidney dialysis and still jumping out of planes

02-Nov-2021

The Queen of Dialysis shines a light on survivor strength

Skydiver, marathon runner and ‘Queen of Dialysis’, alumna Maddy Warren (Class of 2003) is not easily deterred, so when in 2020 Covid-19 meant that her new exhibition could not happen ‘in real life’, she pulled out all the stops to make sure it could launch on World Kidney Day as planned as a virtual online event instead.

Survivors: Life Unfiltered – which is now at the Oxo Gallery in London – is a joint creative project between Maddy and award-winning photographer and Creative Director, Richard Booth. The resulting exhibition uses art and storytelling as a way to portray the strength, vulnerability and resilience of those who are affected by Chronic Kidney Disease (CKD), shining a light on some of the challenges they face. It is a largely overlooked and under-diagnosed disease , despite over 3 million people in the UK having CKD, (30,000 of whom are kept alive by dialysis) and these numbers are increasing year-on-year.
The aim of the exhibition is to share thought provoking, inspiring human stories that offer a different perspective on the world, as well as to provide important education about kidney health. 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, giving this work a heightened relevance. By displaying the images as diptychs and contrasting people’s outward facing daily lives and passions, against the less visible but significant time commitment and reality of living with their condition. Maddy explains:

We have photographed and filmed interviews with over 30 people and families; our “Survivors” range from two to 78 years old and come from all walks of life. Their stories are all unique, covering topics as diverse as facing mortality, mental health, body image, gratitude, survivor’s guilt, silver linings, reconciling with a “new” normal and finding hope whilst living with a life limiting condition.
Maddy’s own story is indeed remarkable in its own right – she has kept herself alive managing her own kidney dialysis at home for 23 years since she was 14 years old, due to having an untreatable auto-immune condition which means she cannot have a kidney transplant. This included her time at Sydenham High, who supported her as she studied from hospital for 18 months before her kidneys failed completely and she learned to do dialysis at home overnight so she could get back to school. A former trustee of Kidney Research UK, over the years Maddy has raised thousands of pounds for UK kidney charities. She became the first woman on dialysis to complete the Virgin Money London Marathon in 2018 and she is a member of a women’s skydiving team. She is now a freelance healthcare advisor and patient engagement consultant and an active peer supporter and passionate public speaker, (including two Tedx talks about dialysis), advocating for patient choice and empowerment. She dedicates all her spare time, energy and passion to the kidney community with the ethos that people should dialyse to live, not live to dialyse:
“I find it a fascinating and humbling fact that the only reason any of us kidney patients are here is due to remarkable scientific advances and to the skill and compassion of incredible healthcare professionals. Surviving on dialysis or receiving a donated organ are both unprecedented experiences which fundamentally shape your values, perspective and life choices.
My own circumstances have driven me to live every day to the full and have taught me to have a deep gratitude for the smallest things. 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 whilst our existence is fragile we can still be strong, an insight which drives me to pursue my passions and face my fears. But I am absolutely an exception to the majority, because I am able to dialyse at home which gives me maximum freedom and control.
Having spent over half of my life peer supporting my fellow patients and campaigning for improvements in care, research and better awareness of kidney disease, I am so excited to see our Survivors project become a reality.“