Let us know what you think and join the conversation at the bottom of this article<\/p>\n
Jordy, who recently came out as non-binary and who was last years Young Scot Awards winner, was diagnosed with cystic fibrosis (CF) when they were two-years-old.<\/p>\n
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.<\/p>\n
But that same month, the 26-year-old started taking a newly-discovered drug Kaftrio on compassionate grounds to see if it would help.<\/p>\n
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. <\/p>\n
Now, about 18 months on from taking their first pill, Jordy said the drug has been life-changing.<\/p>\n
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.<\/p>\n
Its a miracle, they said, still sounding amazed by the improvement in their health.<\/p>\n
I went from puffing, constantly, especially after doing my drag shows, to being able to run up the stairs with ease.<\/p>\n
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.<\/p>\n
But, thanks to Kaftrio, they have been able to have it removed this week a rare procedure, Jordy said, for someone living with CF. <\/p>\n
I was so nervous about getting it done because I have had this tube my whole life, its helped keep me alive, they said.<\/p>\n
But I am the healthiest I have ever been and, I cant believe I can say this but, I dont need it anymore to maintain a healthy weight.<\/p>\n
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.<\/p>\n
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. <\/p>\n
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.<\/p>\n
Although, putting on the weight has also been a bit of a nightmare because my drag clothes dont fit, I have gone up a few dress sizes.<\/p>\n
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.<\/p>\n
This drug took me off the transplant list, its stopped my lungs deteriorating and I no longer have a tube in my tummy.<\/p>\n
\"And for the first time in my life, I am writing and creating new art about being well, not ill.<\/p>\n
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.<\/p>\n
\"We won't stop until everyone with cystic fibrosis has access to the best possible treatments.<\/p>\n
Kaftrio can be prescribed to people aged 12 and over, with certain mutations of the gene that causes CF. <\/p>\n
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Jordy Deelight: Edinburgh drag queen with cystic fibrosis speaks about effects of 'miracle drug' - Edinburgh News<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Let us know what you think and join the conversation at the bottom of this article Jordy, who recently came out as non-binary and who was last years 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. Continue reading