A Saffron Walden student's excruciating stomach cramps turned out not to be period pain but her kidneys failing.
Sasha Bellamy, 19, is on dialysis and waiting for a transplant. She is sharing her story for World Kidney Day (March 11) to raise awareness and help others going through what she experienced.
“I went from a healthy teenager to being told I had a rare genetic kidney condition in a month. It was a real shock,” she said.
Sasha was 15 when she went to the school nurse at Saffron Walden County High School after being in pain, and was advised to see her doctor for a full blood test.
When the results came back the doctor said she needed to go to A&E immediately.
She spent the day having tests. Medics suspected she had kidney problems and she was transferred to the kidney specialist renal unit at Nottingham because she was classed as a child.
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,” she said.
Sasha was diagnosed with Nephronophthisis, a rare genetic condition, and it changed her life completely.
“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, who is now 17.
Tests showed Ashley has normal kidney function for now. She is being checked every six months to make sure she is OK.
Sasha's care was transferred from Nottingham to Addenbrooke's Hospital.
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.”
Sasha is studying early years childhood studies at Anglia Ruskin University. Lectures are currently being held online because of the pandemic.
She also runs an online clothing boutique called Something Unique Boutique on Instagram.
She is nervously looking forward to lockdown lifting.
“At times during lockdown I’ve felt like I’m going mad - 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.”
Since her diagnosis, family and friends have rallied around and held fundraising events for Kidney Research UK, so that further research can be done and further people can be supported.
The fundraisers have included a friend running the Virgin Money London Marathon, and the Great North Run, a family disco night, and a fundraiser at the football club.
Sasha said if anyone wants to help, please send a donation to Kidney Research UK.
Dr Maria Tennant, head of communications at Kidney Research UK, said: “We are so grateful to Sasha for sharing her story to help raise awareness about kidney disease.
“Kidneys are the unsung heroes inside our bodies. These small organs have a huge role to play in keeping us healthy, acting like mini washing machine inside us, to get rid of toxins.
“When things go wrong, the consequences can be devastating. We want to help people look after their kidneys, and to encourage those at risk to get their kidneys checked.”
To find out if you are at risk of kidney disease take the Kidney Research UK online kidney health check at https://kidneyresearchuk.org/kidneyhealthcheck/
For more information about World Kidney Day in the UK visit www.worldkidneyday.co.uk.
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