Republish this article
9th March 2016

A shout out to kids & their kidneys

Not many kids will know that today is World Kidney Day, but Lily Letchford does. She’s been raising funds for research into children’s kidney disease since she was six.

“World Kidney Day supports those with kidney problems like me. It is annoying living with it because I am away from school. Although school can be stressful it’s nice to be there every day, but with my condition I can’t be. All those people with the same as me, I know what you’re going through,” says the 10-year-old.

When Lily was three and a half years old, she was diagnosed with Vesicoureteral Reflux (VUR), a condition that causes urine to flow the wrong way and carry bacteria to the kidneys rather than flushing it out of the body via the bladder.

“Lily was in a lot of pain whilst urinating and she wet herself several times,” her mum Charlie recalls. “She was quite distressed and had a high temperature. When I took her to the doctor, he told me she had a suspected urinary tract infection. At that time it was standard practice to refer a child for an ultrasound to check for potential reflux. She had the scan and they were able to tell that she had VUR,” she tells This Is Medtech.

What it means for Lily is frequent and painful urinary tract infections and increasing damage to one of her kidneys, which now only contributes about 3% of her total renal function. “My problem is in my left kidney and it’s very teeny,” explains Lily. “I’m resistant to most medicines so I can only use a few to help my kidneys. It’s not the best,” she adds. Lily’s also developed high blood pressure, a common side effect of kidney disease that has to be monitored closely.

Kidney disease can occur for a number of reasons, including problems with the immune system or infections. It affects over three million people in the UK, but up to a million of these people may be undiagnosed. This is worrying as it can’t be reversed. However, early diagnosis and prompt treatment, as well as changes in diet and lifestyle, can sometimes help slow down or prevent any further damage.

Left unchecked, kidney disease can progress to kidney failure, which is fatal without treatment by dialysis or a kidney transplant.

World Kidney Day is a global awareness and education event that’s held every year on the second Thursday in March. The 2016 campaign has a specific focus on children, who are more likely to experience kidney disease as a consequence of birth defects or inherited genetic kidney conditions. Lily, whose condition is likely genetic, has helped to raise funds for Kids Kidney Research, a UK charity that supports vital kidney research for babies and children across the country.

According to Charlie, medical technology is key to managing Lily’s disease. “Without DMSA scans, we would not know how well her affected kidney works. Also, my life is governed by urinalysis sticks ‒ urinalysis testing in the lab is essential. Being able to determine bacteria and what drugs they are sensitive to is absolutely essential,” she comments.

Doctors are talking about possibly removing Lily’s damaged kidney (a procedure known as nephrectomy), but there is a good chance it can be performed using keyhole surgical techniques, avoiding a lengthier recovery and stay in hospital.

But that’s just the physical part. Lily sometimes feels like nobody can really understand what she’s going through or that she’s somehow being punished. “The main impact it’s had on a lasting basis is the knock to her confidence,” says Charlie, although Lily says she gets a lot of support from her friends.

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