A TARSET nurse who has spent 15 years treating a rare skin condition is set to retire.

Pauline Graham-King’s career as a nurse began 40 years ago, but the last 15 years have been spent as a clinical nurse specialist for Epidermolysis Bullosa (EB), a condition which causes the skin to blister and tear at the slightest touch.

One of her first experiences of the condition was with Jonny Kennedy, a young man who lived in Rochester and was the subject of the Channel 4 documentary The Boy Whose Skin Fell Off.

Jonny was a well known personality in the North Tyne, who decided to work with film maker Patrick Collerton to document his last months and help raise awareness of his devastating and rare condition.

In 2001 Pauline began working for the EB charity Debra, after seeing an advert for a job. Having started her career in Queen Alexandra’s Royal Navy Nursing Service, at the age of 18, Pauline had worked in various places in the Middle East for 10 years before returning to the UK to do her nursing degree at the University of Sunderland.

She later worked in research for Newcastle University and St Benedict’s Hospice, in Sunderland, and while she had worked with wounds previously she admitted she knew very little about EB before working with Jonny.

It was emotionally challenging for Pauline, who said at first felt like she wasn’t making a difference, due to the incurable nature of the condition.

She said: “Jonny was such a character and a joker. He also wasn’t very fond of professionals. At first it was very overwhelming and I said to Jonny that I wasn’t sure I could keep doing it because I didn’t think I was making a difference.

“Jonny said to me ‘You are making a difference; you have made a difference for me’. And he told me to continue what I was doing after he was gone.

“Thanks to him I went on to meet so many other incredible young people with EB. It made me realise that they are the experts, as none of us can really understand what it is like or how devastating it is.”

Jonny passed away in 2003 aged 36, having documented the end of his life through the documentary, which was released the year after his death, and later led to a book written by Roger Stutter.

Pauline was there during much of the filming of the documentary, and often drove Patrick, who then couldn’t drive, to see Jonny during the filming process. She praised Jonny for keeping his sense of humour during the documentary, even towards what he knew to be the end of his life.

Jonny passed away following a weekend in London, where he met Cherie Blair to try to raise awareness for his condition. Pauline called it “inspirational” that Jonny still made the journey despite his ill health, which showed his dedication to helping others.

Thanks to his words of encouragement, Pauline continued to work for Debra, covering a vast area from Birmingham right up to the Outer Hebrides, which brought her into contact with many other inspiring individuals, including journalist and campaigner Lucy Glennon.

Five years ago the Government received extra money to put into rare diseases, which meant Pauline and her colleagues were employed on NHS contracts, and based at Guy’s and St Thomas’ hospitals in London.

Her experience with EB led her to a career of pioneering work, from not only completing home visits and completing tasks such as changing bandages, which can take up to three or four hours a day, but also looking into the development of drugs for the condition and educating others on the rare condition.

Pauline would often accompany those with EB to their local hospital and teach local nurses about the condition to ensure they were equipped to deal with the patients.

Pauline said: “They need to be treated with such delicate care because of how fragile their skin is; the slightest touch can result in burns and blisters, to the point where they can end up with burns on 70 per cent of the body.

“Children who are born with the disease get called ‘butterfly children’, because their skin is as fragile as the wings of a butterfly. Sadly, most people with the condition die at a young age due to the constant strain on the skin which can cause infections and cancers.

“The most incredible thing is that many of them go on to do amazing things despite their condition. Many go to university; Lucy became a journalist and another girl became a teacher. It has been absolutely inspiring and humbling to be their advocate.”

In October 2014 Pauline received a Care award for her work with EB and for going above and beyond for those she worked with.

Set to retire, at the aged of 62, on November 1, exactly 15 years to the day since she began working with Debra, Pauline is ready to say goodbye to her long commutes to London – but not to the people she has worked with over the years.

Pauline and her husband Bill, who she praised for his support over the years, own a B&B in Tarset, where they will be continue to welcome EB sufferers to stay with them.

Pauline, who is still in touch with Jonny Kennedy’s mum, said: “The work I have done has had a lasting impact. I wouldn’t just forget about the condition and the people just because I have retired. Myself and Bill feel a connection with the people we have met over the years.

“They will be able to come and visit us free of charge, either with their families or to give their families some respite – that way I will continue to help them and they will continue to inspire me.”