How do I take care of my child if they have epidermolysis bullosa?

How do I take care of my child if they have epidermolysis bullosa?

Your child’s needs are unique, and they may not yet have the ability or vocabulary to express what’s bothering them. The following tips will help make your child as comfortable as possible:

• Thoroughly wash your hands before handling your child’s skin.
• Avoid wearing latex gloves. They may create friction.
• Gently bathe your baby’s skin in sections rather than putting their whole body in a shallow tub.
• Consider laying your newborn baby on absorbent pads instead of putting them in diapers.
• Use diapers with Velcro® straps. Adhesive straps (tape) can accidentally stick to your child’s skin.
• Cut the elastic off of the diaper leg holes.
• Place silicone gel sheets in the diaper lining to prevent skin from sticking to open blisters.
• Be careful how you pick your child up. Avoid putting your hands under their armpits (axilla). If their thighs and back are free from blisters or sores, wrap one arm around their thighs and use your other arm to support their back.
• Encourage them to be as active as their EB allows them to be. Inactivity may cause other complications, including constipation and muscle loss (atrophy). Swimming is a great form of exercise that has minimal impact.
• Discourage rough, physical activities or play, especially any that cause your child’s body to heat up and sweat.

It may be difficult treating your child’s symptoms, and you may feel overwhelmed or stressed. Ask your healthcare provider about any other tips or suggestions on how to keep your child — and you — as comfortable as possible.

Parent support groups also allow you to share your experiences and learn new ways to manage your child’s EB.