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0300 111 1234

PKD Voices

Are you PKD aware?

Although Polycystic kidney Disease (PKD) causes pain and suffering to millions around the globe  - with the first case dating as far back to the death of the King of Poland in 1586 - awareness and therefore understanding of the disease is still very low. We want to change that.

PKD Voices features the tragic as well as triumphant stories of those who live with PKD: men, women, and children, each with a unique experience to share. If you’ve a story to tell please do get in touch here.

PKD Voices features the tragic as well as triumphant stories of those who live with PKD: men, women, and children, each with a unique experience to share. If you’ve a story to tell please do get in touch here.

Shane's Story

Shane's Story

Shane shares his journey from discovering he had PKD and fighting a disease he’d never heard of, to making the difficult decision to leave London and return home to Australia to be cared for by fam...
Nicola's Story: A ‘wee’ inconvenience, but worth it!

Nicola's Story: A ‘wee’ inconvenience, but worth it!

Nicola Moore opens up about the shock of discovering she had PKD after treatment for a knee injury, and the challenge of managing tolvaptan’s frequent bathroom trips - all while continuing as a sec...
Stephen's Story

Stephen's Story

I am Stephen Adams, 45, from Glasgow, Scotland. I am married to Jennifer and we have 3 children: Matthew, Chloe and Joshua. My occupation is in software for a UK customer engagement software compan...
Ross's story

Ross's story

The first anniversary of a kidney transplant is an unforgettable milestone for anyone. For Ross, a Baptist minister and father of three from Milton Keynes, and his wife Joy, who selflessly donated ...
Michael's story

Michael's story

On top of the world from taking gold down under at the World Transplant Games in Australia, 60-year-old Michael from Oxford shares some of his PKD journey! "It was hard to ignore PKD in my fami...
Jaxson's story

Jaxson's story

On the first anniversary of donating a kidney to her son when he was just two years old, brave mum Jess shares some of their PKD jouney so far.   "Jaxson was born in February 2020 with Autosoma...
Andy's story

Andy's story

“A transplant is a magical combination of love and science”, says PKD patient and double transplant recipient Andy Taylor as he prepares for the 9000-mile journey to Perth, Australia to compete in ...
Katie Banks

Katie Banks

In the 12 years since 48-year-old Katie was diagnosed with PKD, her kidneys have grown so large she is regularly asked "When's it due?" or "Boy or girl?" by people who innocently assume that she’s ...
Keith and Mary

Keith and Mary

As we all rallied to raise awareness of kidneys and kidney health for World Kidney Day, we shared the story of one devoted husband who gave the biggest gift of all to transform his wife’s life. In...
Hazel's story

Hazel's story

Cornish couple, 28-year-old factory worker Daniel and 25 year-old Aria, a student and author, were thrilled at the arrival of their second child, Hazel. And then came the shocking news that their b...
The Rattray Family

The Rattray Family

Three generations of the Rattray family have been diagnosed with PKD. Chloe Rattray has shared her family's story with us including their amazing fundraising efforts this year to raise money for PK...
Stephen's story

Stephen's story

Stephen, a sports mad grandfather and gold medallist from Bishops Lydeard, shares his story on the 25th anniversary of his kidney transplant!  The plucky 75-year-old retired program analys...
Sue and Helen

Sue and Helen

Sue Norris is taking on the Jurassic Coast Marathon Challenge, a 42KM walking event along the Dorset coast, this May. She is taking part and fundraising for PKD Charity in memory of her sister Hele...
Rob's Story

Rob's Story

Rob Blagden from Gloucester is taking part in his first ever half marathon this year in support of PKD Charity following a kidney transplant in 2015. Here, Rob tells us about his transplant exp...
Luke's story

Luke's story

It's every parent's worst nightmare to have a poorly child. For Tori and Carl Amos, when 11-week-old Luke began to scream and turn blue while playing happily in his rocker one day, they were sudden...
Lindsey and Richard

Lindsey and Richard

Lindsey, a 30 year-old wife and mum shares her heartbreak and fears for the future after her husband - who she met when she was only 15 - was suddenly diagnosed with polycystic kidney disease. ...
Lynnette Pickett and Nicky Baker

Lynnette Pickett and Nicky Baker

Sisters Lynnette Pickett and Nicky Baker took part in both the 2021 London Landmarks Half Marathon and the London Marathon, raising over £4,000! Four generations of their family have been diagn...
Bill, Rob and John

Bill, Rob and John

Former BBC Scotland presenter and journalist Bill Whiteford tells the unique story of how he and his brothers came to receive kidneys from living donors... by 3 different routes... within 3 years o...
James

James

The number of living organ donors in the UK has trebled over the last 20 years, with kidneys being the most commonly donated organs. In fact a 1/3 of all kidney transplants carried out in...
Justin and Josh

Justin and Josh

It’s common for family members with PKD to have shared experiences, but no one could have predicted that brothers Justin and Josh would end up having kidney transplants, at the same hospital, withi...
Kayla

Kayla

Grossly enlarged kidneys are common for many people with PKD, often leading to severe pain, infection and even mobility problems. Kayla, a 38 year old teaching assistant, wife and mum tells the sto...
Helen

Helen

Receiving a new kidney is the dream of anyone living with kidney failure, yet for some, the dream can become a nightmare. Here, 55 year old mum of two, Helen, bravely tells the story of her painful...
Martin and Alex

Martin and Alex

Martin Cunningham considers himself to be a lucky man! Despite facing PKD, kidney failure, a kidney transplant, cancer, and more recently major surgery for the removal of a brain tumour, his unendi...
Sonia and Susana

Sonia and Susana

Identical twins Sonia and Susana, share their story of living with PKD and the Facebook post that led to receiving the greatest gift of all! Born and raised in Portugal, the sisters were diagno...
Mark Mears

Mark Mears

Meet Mark, transplant recipient, PKD Charity fundraiser and volunteer, who discovered a love of running that not only gave him a new lease of life but also led to him becoming a British Transplant ...
Pat Wilson

Pat Wilson

Pat Wilson is an Honorary Professor at University College, London (UCL) in the Department of Renal Medicine. She also chairs the PKD Charity Research Advisory Board and recently became a trustee of...
Karen and Daniel Stapleton

Karen and Daniel Stapleton

PKD Charity trustee Karen whose son Daniel was diagnosed with ARPKD at just over 18 months old, shares their very special story. Here, Karen explains in her own words how it felt discovering Da...
Rebecca Murphy-Peers

Rebecca Murphy-Peers

During organ donation week, we share a special story from our trustee Rebecca Murphy-Peers, whose Mum Geraldine leaves an incredible legacy. Here Rebecca tells us how she got involved with PKD ...
Rob and Christine

Rob and Christine

As transplant centres begin to reopen, after most procedures were suspended due to Covid-19, we rejoice in the good fortune of one of our PKD members. Not only that, good fortune that comes in ...
Claire Pullinger

Claire Pullinger

It’s not every day that a trip to the dentist leads to a diagnosis of PKD. But this is exactly what happened to Claire Pullinger, who’d expected nothing more than the removal of amalgam fillings....
Sally Sutton

Sally Sutton

Double celebration for Sally as she reaches 20th anniversary of kidney transplant and 70th birthday in the same week! Sally Sutton, who was awarded an MBE for services to the conservation of ...
Laurence Lacey’s Everesting Cycling Challenge

Laurence Lacey’s Everesting Cycling Challenge

On 5th July, Laurence Lacey took on an incredible Everesting Cycling Challenge in memory of his Mum, Vanessa. Here, Laurence tells us what prompted him to take on this special challenge: Since...