Performer shares kidney failure experience in bid to change organ donor law
A burlesque performer from Shoreham has shared her experiences of living with kidney failure in a bid to change organ donor laws.
Kirsty Biss, who is also known by her performer name, Pebbles Maloney, has spent 500 hours on dialysis since she was diagnosed with renal failure in November 2015.
On World Kidney Day last Thursday, the 25-year-old live streamed one of her four hour dialysis sessions – which she undergoes three times a week – using the Facebook page she has set up to document her illness, called Kirsty’s Kidney Chronic-ill’s.
She said she was ‘overwhelmed’ by the support she received and said: “I’m really passionate about doing what I can to raise awareness about renal failure.
“The past year has been incredibly tough, having to deal with a huge array of changes in my body, mind and lifestyle.”
Kirsty was born with Cystinosis, a metabolic disease affecting her kidneys and eyes, but had a ‘relatively healthy’ childhod, thanks to the determination of parents Tina and David, of Downsway, Shoreham.
“I almost felt there was nothing wrong with me,” said Kirsty, who recently moved to Hove with her partner Harry Ticehurst, 23.
It was after she spent the summer of 2015 performing burlesque at festivals around the country that she fell ill and doctors found her kidneys were functioning at just 12 per cent.
“At one point I was told they were surprised I was still standing,” she said.
Adapting to her condition has been difficult, she said, ‘being someone that’s so free spirited’.
It affects all parts of her life and she struggles with fatigue, vomiting and naseau everyday, muscle cramps, keeping to a highly restricted diet and ‘brain fog’ - confusion and forgetfulness caused by urea in the blood.
“Brain fog is one of the worst things for me,” she said. “I try to be involved but I struggle with group conversations sometimes.
“A lot of people have no idea kidney failure even affects the mind.”
Her live broadcast drew attention to these little-known effects and the everyday struggles of living with an invisible illness.
She is also supporting a campaign to introduce an ‘opt out’ approach to organ donation in the UK, in which everyone would be automatically registered to donate, unless they objected.
Kirsty is on a long waiting list to receive a blood type O positive or negative kidney transplant.
She encourages people to sign up to the organ donor registry but said: “Unless your friend or family member needs an organ, it’s at the back of your to do list.”
According to a survey by the British Medical Association conducted earlier this year, while two out of three people wanted to donate some or all their organs after death, only a third were signed up to the organ donation register.
A petition calling for the opt-out system to be introduced claims that since it was implemented in Wales in 2015, there has been a 19 per cent rise in kidney transplants.
Kirsty believes the opt-out system would dramatically reduce the shortage of organs and save the NHS the money spent on dialysis, calling it argument that made sense in terms of both ‘head and heart’.
To add your name to the petition, click here
You can also join the organ donor register here
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