Jordy Deelight: Edinburgh drag queen with cystic fibrosis speaks about effects of 'miracle drug'
One year on from when “miracle drug” Kaftrio was made available on the NHS to treat cystic fibrosis, drag queen and DJ from Edinburgh Jordy Deelight, who lives with the genetic condition, speaks of the “life-changing” effect it has had on their life.
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Jordy, who recently came out as non-binary and who was last year’s Young Scot Awards winner, was diagnosed with cystic fibrosis (CF) when they were two-years-old.
In February last year, the drag star, whose shows in previous years have centred on complications that come with having CF, was on a waiting list for a lung transplant.
But that same month, the 26-year-old started taking a newly-discovered drug – Kaftrio – on compassionate grounds to see if it would help.
Kaftrio is a three-drug combination taken daily which can treat 90 per cent of people with the genetic condition, and was released on the NHS in June last year.
Now, about 18 months on from taking their first pill, Jordy said the drug has been “life-changing.”
They noticed a small cough develop within three hours of taking the medication, which continued for several weeks, bringing up mucus that can collect on CF sufferers lungs.
“It’s a miracle,” they said, still sounding amazed by the improvement in their health.
“I went from puffing, constantly, especially after doing my drag shows, to being able to run up the stairs with ease.”
For more than two decades of their life, Jordy relied on a PEG tube - a feeding tube installed into the stomach to allow fluids and nutrition into the body, bypassing the mouth - to keep weight on.
But, thanks to Kaftrio, they have been able to have it removed this week – a rare procedure, Jordy said, for someone living with CF.
“I was so nervous about getting it done because I have had this tube my whole life, it’s helped keep me alive,” they said.
“But I am the healthiest I have ever been and, I can’t believe I can say this but, I don’t need it anymore to maintain a healthy weight.”
Jordy said by the summer of last year, just months after starting the treatment, their lung function improved from 26 per cent to 37 per cent.
Their weight also went from 57kg in February 2020 to 67kg about a year later, which is what they weigh now and is a healthy weight for their height, Jordy said.
“It might not sound like a huge jump,” they said, “but the difference has felt enormous in terms of how I go about my day-to-day.
“Although, putting on the weight has also been a bit of a nightmare because my drag clothes don’t fit, I have gone up a few dress sizes.”
Before they took Kaftrio, Jordy had to do five hours of treatment and physiotherapy a day to help fight pain and infection, but now, they only need to do it for two hours a week.
“This drug took me off the transplant list, it’s stopped my lungs deteriorating and I no longer have a tube in my tummy.
"And for the first time in my life, I am writing and creating new art about being well, not ill.”
Rebecca Cosgriff from the Cystic Fibrosis Trust, who Jordy has worked closely with, said: "It's always so great to hear of the improvement in health of people like Jordy, who have benefited so much from Kaftrio in the last year.
"We won't stop until everyone with cystic fibrosis has access to the best possible treatments.”
Kaftrio can be prescribed to people aged 12 and over, with certain mutations of the gene that causes CF.