Some have called it the most distressing disease of all. Limited Edition wants to join in the fight to find an answer to EB and help support the families affected, and we invite you to join us

IMAGINE greeting your newborn baby. He or she seems perfect. You hold her in your arms... and her skin begins to peel away. You stroke her cheek - and leave an ugly, raw wound.

Imagine discovering that you'll never give your child a big squeezy hug. Changing each nappy will be such a painful procedure that your baby may require a dose of morphine. And you learn that her life, and yours, will be a daily painful round of lancing blisters and applying dressings to much of her body. If the condition also affects the lining of the mouth and oesophagus, she'll never enjoy eating normally either.

For your baby has Epidermolysis Bullosa (EB), a genetic condition in which the skin blisters at the slightest touch, causing painful wounds which fail to heal properly.

Thankfully, EB is not too common - though that's little consolation to these families. It affects one in 17,000 live births. Around 5,000 people in the UK and 500,000 people worldwide are affected.

So far, so awful. Yet these families do cope, and while some children die very young, some go to school, even university, and reach adulthood. Support is given at every stage by the charity DebRA, which marks its 30th anniversary this year.

It was founded in 1978 by a group of UK parents whose children were affected by EB, and now has groups in 32 countries around the world.

Gillian Pigott (above), whose first child Findlay was born looking perfect except for a few missing fingernails and an open sore on his arm, recalls that within 24 hours a nurse specialist from DebRA, Jackie Denyer, arrived at her bedside. EB was diagnosed.

She described how, in every case of EB, there is constant, spontaneous blistering and shearing of the skin from even the gentlest friction, and described the types of EB.

"With each new day, we watched - helplessly - as blisters invaded our little boy's body. The blisters were relentless and unforgiving. All we could do for Findlay was learn the intensive and intricate techniques of blister treatment and dressing changes."

When Findlay was taken home, Jackie and her team from DebRA visited as often as they needed, and were available by phone, day or night, for support and guidance. "Findlay benefited enormously from this incredible team effort, "Gillian says.

"Our routine for nappy changing was always the same. I would feed Findlay or preoccupy him while Ian performed the horrendous task of removing old dressings, lancing blisters and applying new dressings.

"There were days when changing Findlay's dressing would take three hours, and there were days when our dear little boy had to orally intake eight different medications to keep him pain-free."

Finally when the blisters began attacking Findlay internally, he died aged three months.

Gillian says: "The pain we feel over what Findlay had to ensure is unshakeable. But every day we remember the Children's EB Nursing Service.

"Without their highly specialised medical care, Findlay would have had no quality of life."

What is EB?
* EB is a currently incurable genetic skin disorder.

* EB is not infectious and you cannot "catch" it.

* EB causes a breakdown in the natural proteins that hold the skin and internal membranes, causing blistering and sores at the slightest touch.

* Excessive blistering may create scar tissue which causes toes and fingers to fuse together, or cause the oesophagus to narrow, making eating difficult.

* EB is passed on from parents to children. A parent with EB has a one-in-two chance of passing it on. Where neither parent appears to have the condition but both are carriers of the faulty gene, there is a one-in-four chance of their child having EB.

* EB comes in three types. Simplex (70 per cent of cases) is the least severe, with blistering often confined to hands and feet. Dystrophic (25 per cent of cases) features widespread, constant blistering and scarring, with resulting fusion of fingers or contracted hands. Junctional AB is rarer (5 per cent) and may lead to death in infancy.

Is there hope for these families?
* DebRA supports families as they learn to cope with their child's condition. Its medical and support team advise on pain relief, dressings, diet, and every aspect of living with EB.

* There is no state or industry research into EB. DebRA supports research into its cause as well as into wound healing, a cancer that EB may cause, and pain management. It is also the world leader in identifying and funding research projects likely to lead to a cure and successful treatments for EB.

Will you help too? Throughout this year we shall be focussing on the efforts being made to help people born with EB. We shall be sharing news of the courage of so many who lead fulfilling lives despite horrendous problems; of the wonderful carers and researchers who work tirelessly to improve their lot; the strides made in scientific research; how DebRA helps; and how we too can play a part.

So how can you help? Organise some fundraising event, or make DebRA your chosen charity in your workplace or if you are, say, running a half-marathon. We'll be glad to publicise it for you and run your pictures.

We've lined up some wonderful prizes to be won each month in our raffle, from holidays to spa days and jewellery, with the money going straight to DebRA. More news soon!

You may like to donate to DebRA. You can send cheques made payable to DebRA (UK) to: DebRA, Limited Edition Appeal ref.CENLE999, 13 Wellington Business Park, Dukes Ride, Crowthorne, Berks RG45 6LS.

Or donate by telephoning 01344 771961 - please quote the same reference number. For more information see www.debra.org.uk, ring 01344 771961, or write to the address above.

4:25pm Wednesday 2nd January 2008

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