Welcome!
If you’re here, chances are kidney disease has touched your life in some way… yours, or someone you love.
KidneyKinUK is an extended UK family formed through lived experience of kidney disease.
Some of us are living with a diagnosis. Others are donors, partners, parents, children, siblings or friends - people whose lives have been quietly and permanently reshaped by it.
This isn’t a place for advice or expectations about how you should cope. It’s a place to hear how others have actually lived it: the uncertainty, the exhaustion and fear, but also the resilience, humour, connection and moments of calm that appear along the way. We hold space for the hard parts, without judgement, while sharing what has helped people adapt, regain footing, and find a sense of steadiness in everyday life. The experiences here are real, but they are not without warmth or hope.
If kidney disease has entered your world in any form, you belong here - and whatever you’re carrying, you don’t have to carry it alone.
John, Lindsey and Lorna
We’re a family who’ve been living with kidney disease for several years, as a husband, a partner and a sister-in-law. John has been diagnosed with kidney failure. Lindsey, his wife, does not have kidney disease, but her life, and their shared family life, has been deeply affected by it. Lorna, John’s sister-in-law, is preparing to donate. Along the way, we’ve learned that kidney disease rarely affects just one person; it reaches into relationships, family life, work, and the everyday routines you don’t expect to change.
Like many families, we found ourselves navigating a vast amount of information, opinion and well-meant advice. Some of it was genuinely helpful. Some of it wasn’t. Much of it felt overwhelming, particularly at the start.
Through lived experience rather than instruction, we’ve gradually learned what feels supportive, what’s worth holding onto, and what can be gently set aside. There have been difficult moments, but also steadier ones - moments of connection, clarity and reassurance.
KidneyKinUK grew out of that understanding. It isn’t about giving advice or telling anyone what to do. It’s about sharing real experiences and reflections, in the hope that they bring perspective, reassurance, and a sense that you’re not facing this alone.
About
Shared Stories of Living With Kidney Disease
Person Diagnosed (PD)
(PD) Partner
(PD) Children
(PD) Parent
(PD) Siblings
(PD) Extended Family
(PD) Friends
Donor (D)
(D) Partner
(D) Children
(D) Parents
(D) Siblings
(D) Extended Family
(D) Friends
Contact Us
We’re not here to tell you how to live or what to do. We’ve simply been living alongside kidney disease for the past six years, and we share our experiences openly - what we’ve tried, what we’ve learned, and how it’s shaped our everyday lives along the way.
If a conversation feels like it might help, you’re very welcome to get in touch.
And if you’d like to be part of the KidneyKinUK family, or share your own experience, whatever your relationship with kidney disease, please complete the form. We’d really love to hear from you.
