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Shocking that nothing has changed in 20 years

23 April 2024

Twenty-five years ago, Kathryn Croker faced kidney failure after being diagnosed with the rare disease, IgA vasculitis. Receiving a transplant from her dad in 2013, she then began volunteering with us at Kidney Research UK and now shares her own experiences to help shape the future of research as a volunteer community ambassador and research network volunteer.

Most recently, Kathryn has shared her perspective as a kidney patient as part of a funding application, helping secure a £9.4m research centre focused on accelerating research into rare kidney disease in children.  

Kathryn says: “I’d got talking to a mum who has a little boy with a similar story to me, just 20 years apart. He’s about ten now but also was diagnosed with IgA vasculitis and within five months his kidneys had failed - the same as me in 1999. It became clear that the treatments and outcomes hadn’t really changed in twenty years, and I was shocked. So that spurred me on to do something about it.” 

Kathryn Croker with her dad Kevin
Kathryn Croker with her dad Kevin

I struggled mentally and physically

Kathryn was just 13 years old when she was rushed into Great Ormond Street hospital with crippling stomach and joint pain. Her family had received a call from her doctor to say recent blood tests showed signs of kidney failure, and it turned out that the rash she had noticed the previous autumn was a symptom of IgA vasculitis. Her kidneys had failed, and immediate dialysis and plasma exchange were necessary.  

Kathryn says: “It came from nowhere but in the space of five months it caused my kidneys to completely fail which was a real shock. It massively changed my life. I missed a whole year of school in year eight. At that time, there was no social media, we had no mobile phones and I lived in a little village, so I lost touch with a lot of friends and that is really difficult when you’re 13 years old.” 

Treatment restored Kathryn’s kidney function to around 40%, but the disease continued to have a huge impact. She says: “I struggled physically and mentally. Having the treatments, dialysis and being hooked up to those machines was a lot to take in. I was on a high dose of steroids, put on weight and couldn’t fit in my clothes, which made me self-conscious. It really knocked my confidence.” 

Knowing she would one day need a transplant, Kathryn tried to life her live with as much freedom as possible. Passing her GCSEs, A Levels and graduating university in Sheffield were huge achievements.  

The greatest gift from my dad

Once in work in her twenties, Kathryn’s kidneys deteriorated. She says: “I had to cut my hours because I couldn’t cope with the tiredness. There is nothing like the tiredness you get when your kidneys are failing.”  

Dialysis became necessary and Kathryn says: “It was really harsh on my body; my blood pressure was through the roof, and I couldn’t do the full four hours because it made me sick.” 

Kathryn’s parents offered their kidneys for transplantation, and it was her dad who went into surgery with her in 2013. She says: “I got this greatest gift from my dad, and I always want to look after it. You want it to last forever, but it obviously won’t, because kidneys don’t last forever.” 

Making kidney disease a ‘thing of the past’ 

Kathryn knows there is lots more research to be done to prevent and treat the causes of kidney disease, but she is determined to help make it happen.

She says: “If there was a way to treat rare diseases before they get to that point of causing kidney failure and needing a transplant, that would just be incredible because it changes the course of your life." 

“It’s exciting to be involved in a project with doctors and researchers focused on kidney disease in children, as typically research involves adults. Hopefully in the next 20 years or less, what I’ve experienced since childhood will be a thing of the past because I don’t want anyone to go through what I have. This new research centre is an exciting opportunity to achieve that.” 

Bride holding flowers, next to her dad on weddin gday
Kathryn with her dad on wedding day

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