Brave fight to help sufferers

Sep 3 2007

by Helen Rae, Evening Chronicle

This month the inspirational thoughts of Jonny Kennedy are to be published in a book to help others afflicted by the rare skin condition that took his life. HELEN RAE looks at how North East people with Epidermolysis Bullosa cope with day-to-day tasks BRAVE Jonny Kennedy touched the hearts of millions of TV viewers with a moving documentary about his painful illness. The Boy Whose Skin Fell Off told the tragic tale of the 36-year-old who suffered from the rare skin disorder, Epidermolysis Bullosa (EB). The programme, which followed Jonny, from Alnwick, Northumberland, for four months as he prepared for his death, was seen by more than 4.6 million viewers, making it the most watched documentary screened by Channel 4. Story continues ADVERTISEMENT His close friend Roger Stutter, from Newcastle, encouraged him to write down his thoughts in a journal. They were picked up by Tyneside publisher Tonto Press and Jonny’s life story will go on sale from Thursday, September 27. One woman who hopes the book will help her family is Gillian Jenkins who suffers with Epidermolysis Bullosa Simplex - along with her two-year-old son Ewan. The skin condition means the slightest touch can cause pain as it creates severe blistering to the hands and feet. From their home in South Shields, Gillian, 31, said she welcomed anything which raised the profile of EB. “My son, dad and two brothers all suffer with EB,” said the mum-of-two. “So it is very much part of my life and is just something I’ve had to learn to cope with. “It’s an extremely debilitating condition and causes a lot of pain because blisters can develop all over the soles of my feet and hands, making it difficult to walk. Even doing everyday tasks such as cooking and ironing is painful. “Fortunately, Ewan copes well with the condition as he doesn’t know any different but he gets painful blisters all the time. “However, I do worry that when he goes to school he may be picked on because he’s different or could have problems when playing sports such as football and golf.” For Ewan a simple task such as catching a ball or walking can cause a lot of pain. “Before we had Ewan we sought specialist advise on whether we should go ahead and have children or not.” said Gillian, a human resources adviser. “Our main concern was any child we did have may have the condition as bad as Jonny but we were told that would not be the case and they would have it no worse than what I suffer.” There are currently more than 55 people living in the North East who have been diagnosed as suffering from EB. Since Jonny’s death in 2003, more than £600,000 has been raised in his memory. The book about Jonny Kennedy will be used to increase awareness of EB and raise vital funds which will help provide equipment - not available on the NHS - for sufferers of the condition in the North East. Mr Stutter, from Newcastle, acted as a confidante for Jonny and helped him write his thoughts in a journal. Jonny’s mum Edna, who had to watch as her son heartbreakingly wasted away in front of her as he battled the disease, said she welcomed the book. “It’s a wonderful way to remember Jonny and also keep the awareness of the condition ongoing,” she explained. “Every single pound we raise will help to ease the suffering of those young people who have this condition. “In my 37 years of nursing Jonny, even I can’t fully understand what it must be like to suffer from EB. One of our aims is to assist carers because it is so very hard for them also.” Edna will join model Nell McAndrew to launch the Jonny Kennedy book at Asda in the MetroCentre, between 1pm and 2pm, on September 27. Nell, who has family in Gateshead, said: “Jonny was an incredible man, with more courage, spirit and sense of adventure than anyone I know.” Anyone wanting to help the Jonny Kennedy North East registered charity can contact Eric Duffield on (0191) 274 9056, 07738 076 081 or e-mail jonnykennedynortheast@hotmail.co.uk --------------------------------------------------------- Facts of crippling disorder What causes the disease? The understanding of the causes of EB has grown greatly over recent years. All forms of EB are genetic in origin. What are the symptoms of EB? EB causes blisters. In milder forms the blisters heal normally without leaving permanent damage to the skin. In other forms the blisters heal with scarring which can result in permanent change to the skin. Does the condition only affect the skin? Although the effects of EB on the skin are the most visible symptoms, other parts of the body can be affected. The inside of the mouth may blister, causing discomfort and, in some cases, restricted opening. The gullet can also be affected. Is EB infectious or contagious? EB is neither infectious or contagious and other people cannot ‘catch’ EB from someone with the condition. There is no risk to other people from normal activities such as swimming. Is EB hereditary? It is a genetic condition passed on from parents to children. In some types one parent has EB and it is passed on directly to some of the children. Other types are transmitted as recessive inheritance. In this case both parents will be carrying the gene for the disorder but will not themselves ever be affected, but they are carriers. --------------------------------------------------------- Fragile skin EPIDERMOLYSIS Bullosa is the term used to describe a number of genetic disorders whose principal characteristic is fragile skin. Sufferers’ skins have a tendency to blister in response to things like friction between the skin and clothing. Symptoms within different categories of the disorder vary from mild to severe. In severe forms, the condition can be life-threatening. Treatment can include simple things like avoiding triggering factors such as walking for long distances in warm weather, which causes blistering on the soles of the feet in EB Simplex. Eating harsh foods such as crisps can cause oral blistering, and knocks and scratches can cause huge problems with certain forms of EB. Most sufferers have regimes of creams and dressings depending on the type and severity of condition.

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