Essex woman with rare kidney disease urges families to speak about organ donation
19-year-old Sasha Bellamy's life "changed forever" when she was 15
A woman from Essex with a rare kidney disease is urging families to speak about organ donation on World Kidney Day.
In May 2020, a system was introduced meaning most adults would become donors when they die, unless they opt-out or are part of an excluded group.
Despite the change in rules, family members will always be contacted to check they support organ donation.
Sasha Bellamy, who's 19 and from Saffron Walden, was diagnosed with Nephronophthisis when she was 15-years-old.
She said it was a "shock" to find out:
"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."
Doctors also found her sister had the rare genetic condition, but her kidney function is currently normal and she is being checked every six months.
Sasha has spent the pandemic shielding and despite having the Covid-19 vaccination, she's anxious about when restrictions are eased, and a transplant "can't come soon enough".
She told us the most difficult part of last year was not being able to see her boyfriend between March and August, and having to be alone during appointments.
She added:
"My mum sat waiting outside on the floor and that was hard going in there, I'm still only 19, I'm in the adult unit but I'm still only 19, I still need my mum and dad."
Sasha began dialysis at home in July 2020 after her kindey function declined: "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."
Dr Maria Tennant, head of communications at Kidney Research UK, said: "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."