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A teenager who suffers from a life-threatening condition known as 'butterfly disease', is refusing medication because he is afraid of dying during the treatment. Jon, who is not expected to live past 30, said: 'Its torture, mentally and physically.

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I'm fragile on the outside because of the skin disorder, butterffly on the inside I'm just as weak. Doctors are urging Jon, who has to spend four hours a night bathing and bandaging his delicate skin, to undergo a new treatment that has drastically improved the condition of a fellow EB sufferer, who had one of the worst cases medics had ever seen.

Jonathan Gionfriddo, who suffers from a life-threatening condition known as 'butterfly disease', is refusing medication because he is afraid of dying during the treatment. He is refusing any risky treatment after a routine operation left him fighting for his life.

Epidermolysis bullosa EB is a general term Television x Marsta swingers to describe a group of rare, inherited disorders that cause the skin Iron butterfly massage Stafford become very fragile.

Around 40 Iron butterfly massage Stafford cent of sufferers do not survive the first year and most do not live beyond five years old. EB occurs due to faulty genes, which can be inherited or occur spontaneously. Treatment focuses on relieving pain and treating complications, such as infections or skin cancer. Describing the routine operation, Jon said: 'They couldn't get the breathing tube massag my throat Sigil house Katrineholm my lung collapsed.

So they tried to get me up and my other lung starts to collapse.

Charlie, who was abandoned at birth due to his disorder, was put forward for the revolutionary therapy five years ago by his adoptive mother Trisha Knuth. This involved implanting a donor's bone marrow into Charlie to release stem cells that heal the body from. Jon's mother Brenda said: '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 Staffford Iron butterfly massage Stafford from tissue paper, translucent in appearance, to normal little boy skin.

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The three main types of the disorder include: EB simplex - where blistering occurs in the upper Idon of skin.

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'Butterfly disease' sufferer refuses life-saving treatment Stafford

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