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Teenager thought she had period pain but it turned out to be a rare genetic kidney disease

10 March 2021

A Saffron Walden student, who went from feeling like a healthy teenager to chronic kidney disease in just four weeks, is sharing her story to help other young people going through kidney disease. 

Sasha Bellamy was shocked when what she thought was period pain turned out to be her kidneys failing and she was told by doctors she needed a transplant. 

Sasha Bellamy with her her parents and younger sister
Sasha Bellamy with her her parents and younger sister

The 19-year-old hopes that by sharing her story and raising awareness of Kidney Research UK, it could help others going through what she experienced. 

“I would love for researchers to find a way to make sure I don’t pass on this genetic condition to any children I have in the future,” she said. 

“I went from healthy teenager to being told I had a rare genetic kidney condition in a month. It was a real shock.” 

Stomach cramps were the first sign

Sasha was 15 years old when she began suffering excruciating stomach cramps. 

She took a couple of days off school thinking it must be period pains that all girls struggle with sometimes, but when she went back, the pain continued. 

“I went to see the school nurse who advised me to go to the doctor for a full blood test, for peace of mind, but when the results came back my doctor said go to A&E immediately. 

“Dad drove me there and I was at hospital all day having tests. They suspected kidney problems and I was transferred to the kidney specialist renal unit at Nottingham.  

Two weeks later she was told she had chronic kidney disease and was in urgent need of dialysis and a transplant. It was a real shock.” 

Sasha Bellamy on dialysis in hospital bed
Sasha Bellamy on dialysis

Diagnosed with rare genetic condition

Sasha was diagnosed with Nephronophthisis, a rare genetic condition, and within a month her life completely changed from being a normal teenager, who loved going out with her friends to suddenly having failing kidneys and on medication. 

“I was a real sociable person and loved going out with my friends and celebrating. Suddenly I was told my kidneys were failing and I’d need a transplant. The weird thing is that even to this day I don’t feel ill, but I just get very tired all the time. A few weeks before the stomach pain I was told I looked anaemic but that was it.” 

Once medics knew Sasha had a rare genetic condition, they tested her younger sister Ashley, 16. Tests showed she has it also, but she has normal kidney function for now and is being checked every six months to make sure she is OK. 

Meanwhile, Sasha has been transferred from Nottingham to Addenbrookes Hospital in Cambridge which is only a 20-minute drive away from her home, and in April 2019 she was put on the kidney transplant list.  

Her parents Karen and Steve had tests to see if they could be donors but sadly, they were not compatible. 

“Before I knew it, we were in lockdown, transplants were put on hold and I had to shield so life changed even more dramatically. I’m a high-shielder so didn’t go out or see my friends or boyfriend Stanley from March to August. It was really hard.” 

In July 2020 Sasha’s kidney function declined so she began dialysis at home. 

“It’s keeping me alive, so I am grateful for it. Dialysis is incredible, but I can’t wait to have my kidney transplant. It’s just a waiting game now for a match to be found.” 

A nursery practitioner and small business owner – she runs an online boutique  Sasha is studying early years childhood studies at Anglia Ruskin Chelmsford campus, and is nervously looking forward to lockdown lifting. 

Research can't come soon enough

“At times during lockdown I’ve felt like I’m going mad cos I literally haven’t gone anywhere for months. But the thought of lifting lockdown also makes me feel a bit nervous about going out because you just don’t know if you’re safe.  

“I’ve had the vaccine but Covid is always at the back of my mind. My transplant can’t come soon enough.” 

Meanwhile, since her diagnosis, family and friends have rallied round for various fundraising events for Kidney Research UK including a London Marathon run, a Great North run and a family disco night. 

“Research is so important to help people like me, “Sasha said. 

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