EPIDERMOLYSIS BULLOSA TREATMENT

If you, your child or another relative has EB, coping with the symptoms can be difficult. You do not have to handle EB alone. There are doctors, nurses, social workers, clergy members, psychologists, dietitians (people who study food and nutrition), and patient and parent support groups that can help.

Preventing Blisters

To protect the skin from forming blisters, you can:

· Avoid getting too hot by keeping rooms at an even temperature

· Apply lotion to the skin to reduce friction and keep the skin moist

· Wear soft clothing

· Use sheepskin on car seats and other hard surfaces

· Wear mittens at bedtime to help prevent scratching

Treating Blisters

When blisters appear, the goal of care is to:

· Reduce pain or discomfort

· Prevent loss of body fluid

· Promote healing

· Prevent infection

Your doctor may treat the blisters by:

· Explaining how to safely break a blister in its early stages

· Prescribing a mild painkiller so that changing bandages won’t hurt as much

· Recommending special bandages that will help the blisters to heal, lessen the pain, and prevent infection

Signs of Infection

Even when blisters are treated properly, infections may develop. Signs of infection are:

· Redness and heat around an open area of skin

· Pus or a yellow discharge

· Crusting on the wound surface

· A red line or streak under the skin that spreads away from the blistered area

· A wound that does not heal

· Fever or chills

Treating Infection

If you get an infection, your doctor may treat it with:

· A soaking solution

· An antibiotic ointment

· An oral antibiotic to reduce the growth of bacteria

· A special wound covering (for sores that don’t heal)

Preventing Nutritional Problems

In some people with EB, blisters may appear in the mouth and esophagus, making it hard to chew and swallow. Over time, this may lead to nutritional problems. Because nutrition is so important for proper growth and development, it is important that children with EB eat well.

Steps you can take to help prevent nutritional problems in children with EB include:

· Feed infants using a bottle with a special nipple, an eyedropper or a syringe.

· When the baby is old enough to take in food, add extra liquid to finely mashed food to make it easier to swallow.

· Give your children soups, milk drinks, mashed potatoes, custards and puddings.

· Never serve food that is too hot.

Dietitians can help anyone with EB by:

· Providing recipes for food that is nutritious and easy to eat

· Suggesting nutritional supplements

· Recommending diet changes to prevent stomach or intestinal problems

Surgery

Surgical treatment may be necessary in some forms of EB.

· If your esophagus has narrowed because of scarring, your doctor may suggest surgery to enlarge the esophagus so that food can travel from your mouth to your stomach.

· If you are unable to eat, your doctor may suggest a feeding tube so that food can be delivered directly to your stomach.

· If blisters have caused your fingers or toes to fuse together, your doctor may suggest surgery to separate them.

What Is the Value of Genetic Counseling?

Genetic counseling can be helpful for people with EB and their families. A genetic counselor can:

· Explain how genes cause EB

· Provide information on the likelihood of passing the genes for EB to children

What Research Is Being Conducted on Epidermolysis Bullosa?

Current research on EB focuses on:

· Genes involved in EB

· Ways to correct genes related to EB

· Better ways to heal blister wounds

· Improved bandages for blister wounds

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