Butterfly children
With skin so delicate a hug can hurt, babies born with epidermolysis bullosa live in constant discomfort.
These are the cotton wool children, those who have skin as fragile as a butterfly's wings. They have epidermolysis bullosa.

What is epidermolysis bullosa (EB)?

EB is a rare genetic skin disorder characterised by skin fragility which causes it literally to peel off with the slightest touch or following minor trauma, leaving open wounds. It is caused by a mutation in the keratin gene, which means people born with the condition lack an “anchor” or the “glue” between the outer skin layer or epidermis and the inner layer or dermis.

Any friction can cause blistering and sores, which have been compared to third- degree burns in their intensity. The condition is rare, but affects both men and women and takes several different forms.

EB is usually evident shortly after birth. Doctors describe EB as ‘essentially an inherited second degree burn which may involve the entire skin surface area, as well as potentially any other organ lined or covered by epithelium.’

Life in a cocoon

Even the slightest pressure of clothing or brushing up against someone or an object can lead to painful blisters. In order to protect the skin from infection after blisters burst, patients must often be wrapped head-to-toe in dressings, which must be changed once or twice daily.

There is no specific treatment for EB so all efforts are to make patients’ lives comfortable and to ease the symptoms and pain of this rare condition.

Families dealing with the devastating medical aspects of EB are also often dealing with financial, social and psychological issues. The lives of parents of children with EB almost exclusively revolve around their day-to-day wound care. As a result of the amount of time this daily care demands, these families are usually unable to participate in activities many of us take for granted, such as shopping, eating out, playing in the park or simply playing and spending time with the unaffected children.

Special care for EB

From the beginning families have to consider the child’s care very carefully, starting with the car seat to take the baby home in, the bath, the bed, the nappies used, the texture of clothes and so on.

Some solutions have been to use inflatable baths as normal baths are too hard for an EB baby's delicate skin, padding the car seats, prams and high chairs so that the child’s chances of injury are lessened. Very soft nappies are used and clothes that won’t tear the EB baby’s delicate skin have to be sourced.

As the EB baby grows each developmental stage brings its own challenges (for example crawling causes much pain as does teething and eating solid foods) meaning the EB baby spends most of the time swathed in bandages.

When the EB toddler enters nursery school his teachers have to be trained to do dressings if need be, they have to be counselled in the emotional and psychological aspects of looking after the delicate ‘butterfly’ child and have to assist in getting the other children to understand that the EB child can be physically hurt with any rough play.

For more information and insight into the world of children and families with EB go to www.ebinfoworld.com.

Do you have a special needs child? Share your experience below or mail chatback@parent24.com


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