Rare conditions
Your experience of living with rare renal disease
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Rare renal, Transplant
Sarah's story: living with aHUS
Sarah was diagnosed with aHUS when she was less than two years old. From failed transplants to the importance of support networks, Sarah talks about her experience of kidney disease.
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Haemodialysis, Kidney conditions, Kidney failure, Rare renal
Kieran's story: living with nephrotic syndrome
Kieran talks about how living with a rare renal condition meant getting stared at by children, and how the Young Adult Kidney Group has helped him get into a better place.
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Rare renal
Stewart's story: living with vasculitis
Stewart's diagnosis of vasculitis has affected everything in his life, but he doesn't let the bad days overwhelm the good. After all, his granddaughter has to make someone laugh.
"As someone whose daughter has Alport syndrome, it has been amazing connecting with other families."
From the challenges of balancing a rare renal disease with work and relationships, to the support available for people living with Alport syndrome, Hannah Russell and Susie Gear from the charity Alport UK share their experiences.
Living with a rare kidney condition: your stories
Your questions answered: inherited kidney disease with Dr Chan, nephrologist
Dealing with a rare renal diagnosis as a parent
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Rare renal
Rumer's story: living with Bartter syndrome
Rumer has lived with the rare condition Bartter syndrome her entire life. Mum Amy explains how the disease has affected both of them, from holidaying to making up pillboxes.
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Kidney conditions, Kidney failure, Rare renal
Layla's story: living with aHUS
Layla was diagnosed with aHUS, a rare renal condition. When she is not visiting the Great North Children's Hospital for infusions, she is riding bikes and winning dance competitions.
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Haemodialysis, Kidney conditions, Rare renal
Kitty's story: living with nephronophthisis
For Kitty, a diagnosis with a rare kidney disease meant emergency dialysis and missing out on school. But one donated kidney from her uncle later, Kitty is back living her 'old normal' life.
This webpage has been developed by Kidney Care UK and was funded as a sponsorship by Alexion, Astra Zeneca Rare Disease. All editorial control has been retained by Kidney Care UK.
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