As part of Lleswyl 2024, Daring to Dream teamed up with Kidney Wales and Lupus UK to create a powerful conversation between two lovely people, Carla Williams (a Kidney Wales ambassador) and Khiry Hopkins-Jones (who is an ambassador for Lupus UK).
Kidney Disease, and its impact, is not well understood; it is somewhat ‘invisible’ as an illness. Lupus, an autoimmune condition is also ‘invisible’ and not well understood; often kidney disease can provide the marker for clinicians to start investigating for evidence of lupus. Bringing together two very inspirational people from these different worlds of illness to discuss together their journeys and the emotional impact was important.
Both Carla and Khiry have had tough medical journeys involving kidney failure, dialysis and transplants (and other very serious issues too) and they are keen to share their stories to give hope to others living with kidney disease, by discussing how their transplant has given them the gift of living again.
They would love to encourage others to think of donating a kidney. In Wales, there are currently 200 people on the waiting list for a kidney transplant.
Watch their conversation below ‘Donating a kidney – giving the gift of life’
More than 7,000 people across the UK are waiting for an organ transplant and 5,500 of them are waiting for a kidney transplant, with over 200 of those being here in Wales; and the average wait for a kidney transplant at the moment is two to three years.
Our sincere thanks to Khiry and Carla. They are keen to share their stories and give hope, as well as giving us just a little gentle nudge to consider being a kidney donor. Such important messaging coming out through two very personal stories.
Every day, people in the different clinical teams are coming across people’s personal stories. Communicating by means of personal stories is very important:
“Absolutely important, yes. And story, that’s the word, isn’t it? And what’s so important is that story needs to be heard by people. I think it’s really just that opportunity to be listened to, not judged, not signposted, not advised, just heard in that story, it’s very important.” Dr Julie Highfield, Consultant Clinical Psychologist, Critical Care, University Hospital of Wales
Andrew Jenkins, from hit show ‘The Traitors’: “I say to people, all I wanted when I was struggling, when I was in dark days, I just wanted somebody to listen to me and talk. Just get stuff off my chest and talk to someone. I couldn’t talk to my family because I was already putting them through enough stress and worry as it was.
I didn’t want to see a medical professional because I felt there was a stigma attached to doing that back then. All I wanted was somebody to talk to, just to offload things to and just not give me an opinion or answer, just listen.
It’s all about ‘making space to talk’ for those you are close to.”
Dr Julie Highfield: “Support networks to provide ‘spaces to talk’ are essential. We can’t get everything we need from just one person. We need different people for different things. So I would also say sometimes it’s not about talking at all, it’s people you can just be with and be quiet with. Sometimes it is also about just not pushing people when they’re not ready to talk. Sometimes people haven’t put together the words, they’re not ready to share their story. But you can keep them company until they are ready.”
Daring to Dream would like to thank Carla and Khiry for sharing their stories, inspiring others and bringing hope.
Thank you also to Kidney Wales and Lupus UK for your collaboration and support.
