‘It’s torture’: Teen with no skin opens up about fatal ‘butterfly disease’
Jonathan Gionfriddo, who suffers from rare epidermolysis bullosa (EB), isn’t expected to live past 30.
Despite this worrying prognosis, the 17-year-old is reluctant to take medication as he fears treatment could be fatal.
He revealed what it was really like to experience EB symptoms that affect one in every 50,000 people worldwide.
The disorder, also known as butterfly disease, causes the skin to blister and fall off.
The teen said: “Its torture, mentally and physically. I’m fragile on the outside because of the skin disorder, but on the inside I’m just as weak.”
He remembered: “They couldn’t get the breathing tube down my throat and my lung collapsed. So they tried to get me up and my other lung starts to collapse.
“I almost died, I had a near-death experience.
“If the treatment wasn’t life-threatening then yes I would definitely do it, but it’s just not worth the risk.
He met Charlie Knuth, from Minneapolis, who had been put through therapy to strengthen his skin.
This bone marrow transplant released stem cells, helping his bodily tissues to repair themselves from within.
Charlie’s mum Brenda spoke about how the treatment had helped her son, remarking: “Within weeks you could literally watch his skin heal.
“It started in his head and you could see it travelling down his body, and overnight I witnessed his skin go from tissue paper, translucent in appearance, to normal little boy skin.”
Charlie has now put himself forward for a gene-editing trial, which offers a hope for an EB cure.
Listening to courageous Charlie’s story has now opened Jon’s mind up to the possibility of going through therapy.
He has since travelled thousands of miles to see a specialist to discuss whether treatment could be a success.
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