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Epidermolysis bullosa: Tips dermatologists give parents


Dermatologists are committed to improving the quality of life for children who have EB and their parents. One way they do this is by giving parents information to help them care for their child.

These tips include the following:

  1. Try to reduce blisters from diapers and clothes with these tips:

    • Use disposable diapers with Velcro fasteners instead of tapes, which could stick to the child’s skin.
    • Line each disposable diaper with a product called a silicone contact sheet if the diaper area is fragile. This product won’t stick to wounds. You can find it at medical supply companies.
    • Dress your baby in a one-piece lightweight garment that fastens in the front. This can make it easier to dress and undress your child.
    • Turn clothing inside-out so that the seams show. Sometimes, when seams rub against the skin, blisters form.
    • Use special therapeutic clothing that has been tested in clinical trials and shown to be less irritating than other clothing.

  2. Prevent medical gloves from injuring your child’s skin. The latex or vinyl may rub your child’s skin, which can cause blisters. To help prevent this, dermatologists recommend:

    • If you can, try to stop wearing gloves during wound care: Instead of wearing gloves, wash your hands frequently while caring for your child’s skin.
    • When gloves are a necessity: Apply an ointment, such as pure petroleum jelly, to the gloves. This helps reduce friction.

  3. Ask your child’s dermatologist to recommend skin care products if you experience a problem with one. Lotions, creams, and ointments help keep your child more comfortable, and your child’s dermatologist can be an excellent source for product recommendations if:

    • A skin care product becomes less effective after a period of time
    • Your child needs an anti-itch product
    • A wound becomes extremely stubborn and is not responding to the usual ointment

  4. Report complications as soon as they arise. Blisters can develop just about anywhere, and sometimes scars appear when the skin heals. Both can lead to unexpected complications.

    With early intervention, many complications can be lessened or prevented. Here are a few examples to illustrate why it’s so important to report complications as they occur:

    • Scarring on the hands or feet can cause the fingers or toes to join together, but learning a new bandage wrapping technique can prevent or delay this.
    • Blisters in the rectum can be so painful that a child holds back on bowel movements. Changing what you feed your child can ease the pain, allowing your child to have bowel movements.
    • Dryness in the eyes can lead to a scratched cornea, but using eye drops or eye ointments may prevent this and other eye problems.

  5. Encourage play and movement. It’s understandably hard to encourage your child to play and move about when the skin is so fragile, but children with EB should move as much as they can. It is better for a child to get a blister now and again than to be too afraid to move.

    Moving around helps to:

    • Prevent constipation.
    • Reduce the shortening and thickening of muscles, tendons, and other tissues, which can make it difficult if not impossible to move the affected area of the body.
    • Stop muscle wasting, as muscles can shrink and weaken without movement.

  6. Make appointments for full-body skin exams. Regardless of the type of EB your child has, dermatologists recommend full-body skin exams beginning at age 10. Problems can develop when wounds:

    • Occur again and again
    • Cause pain
    • Stay the same for longer than 1 month
    One such problem is an increased risk of developing skin cancer. For this reason, dermatologists recommend that a child who has EB have full-body skin exams as often as shown below.

    AgeFull-body skin exam
    10 to 16 years old
    Every 3 to 6 months
    16 years and older
    Every 3 months
  7. Keep learning about EB. The more you know, the better you can care for your child. A recommended resource for learning more about EB is EBnurse.org. On this site, you can access the latest information, ask an EB nurse questions, learn from other EB families, and pick up tips for caring for your child.

  8. Try to have your child evaluated at one of the EB clinics in the United States at some point. Being seen by a team of specialists at an EB clinic helps to ensure that your child gets the required care and that you are aware of available resources.

    During an evaluation, your child may be seen by a dermatologist who has expertise in EB along with specialists in gastroenterology, nutrition, dentistry, hematology, hand or plastic surgery, orthopedics, ophthalmology, social services, pain management, and physical therapy.

    To date, there are 4 EB clinics in the United States that offer this multidisciplinary approach to care:

    • Children’s Hospital Colorado
    • Cincinnati Children’s Hospital
    • Lucille Packard Children’s Hospital (Stanford University in California)
    • Phoenix Children’s Hospital

  9. Consider sending your child to Camp Discovery for one week. It can be frightening to think about being away from your child for a week, especially if your child needs daily medical care. Camp Discovery is equipped to handle these needs while giving your child an opportunity to experience what it’s like to go to summer camp. Many true friendships begin at Camp Discovery, and many kids look forward to camp all year long.

    “[While at Camp Discovery] I tried archery, even though my hands are bandaged. I rode a horse – which was awesome – and I even got to go to a dance.”

    ─ Henry, 3rd grader with EB

    To make Camp Discovery accessible to children living with a chronic skin condition, the AAD:

    • Staffs each camp with medical professionals, including dermatologists, pediatricians, physician assistants, and nurses.
    • Sets up each location to handle daily medical care regimens and medical emergencies.
    • Charges nothing to attend, even the costs of transportation are covered.
    You can find out more at Camp Discovery.

    Some children, such as this boy who has severe EB, look forward to spending a week at Camp Discovery all year long.


Images
American Academy of Dermatology

References
American Academy of Dermatology, “Changing children’s lives one summer at a time for 20 years.” News release issued June 20, 2013.

Badger KS, O’Haver J, et al. “Recommendations for a comprehensive management plan for the child diagnosed with epidermolysis bullosa.” J Dermatol Nurses’ Assn. 2013:5(2):72-8.

Harris, A, Jain S, et al. “Poster 1594: The Epidermolysis Bullosa Disease Activity and Scarring Index (EBDASI) mobile phone application.” J Am Acad Dermatol. 2015:72(5):AB122. Commercial support: None identified.

Krämer SM, Serrano MC, et al. “Oral health care for patients with epidermolysis bullosa - Best clinical practice guidelines.” Int J Paediatr Dent. 2012:22 (Suppl. 1): 1–35.

Watkins, J. “Diagnosis, treatment and management of epidermolysis bullosa.” Br J Nurs. 2016 Apr 28;25(8):428-31.

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