Call your doctor if you or your child develops unexplained blisters. Mention right away if you see any signs of infection around a blister, such as pus, redness, increasing pain or warm skin. In some cases, your doctor may recommend immediate medical care.
After examining your or your child, your doctor may refer you to a specialist in the diagnosis and treatment of skin conditions (dermatologist).
Specialized epidermolysis bullosa centers
Centers that specialize in the diagnosis, evaluation and treatment of people with epidermolysis bullosa may belong to a network called EB Clinet. Such centers are staffed with doctors, nurses, social workers and rehabilitation specialists who provide specialized care for people with this condition.
Visiting such a center regularly can improve quality of life and reduce hospitalizations from complications for people with epidermolysis bullosa. Ask your doctor if a specialized epidermolysis bullosa center is available to you.
No matter what type of doctor you see first, here's some information to help you prepare for the appointment.
What you can do
- List any signs and symptoms you or your child have been experiencing, and for how long.
- Note any new sources of friction around the blistering areas, if any. For example, tell your doctor if your toddler has recently started walking or your older child has begun physical activities that put new pressure on the affected areas.
- List key medical information, including other medical problems the affected person has received a diagnosis for. Also list the names of all over-the-counter and prescription medications he or she is taking, as well as any vitamins and supplements.
- Ask a trusted family member or friend to join you for your child's appointment. If your doctor tells you your child has epidermolysis bullosa, you may have difficulty focusing on anything else the doctor says. Take someone along who can offer emotional support and help you recall all the information.
- List the questions you want to be sure to ask your doctor.
For epidermolysis bullosa, some basic questions to ask your doctor include:
- What is likely causing the signs and symptoms?
- Are there any other possible causes for these symptoms?
- What tests do you recommend?
- Are treatments available for this condition?
- What can be done to relieve pain or discomfort?
- How do I take care of my child's needs, such as feeding, bathing and clothing him or her?
- What are the possible complications of this condition?
- What signs or symptoms related to this condition should prompt me to call you?
- What signs or symptoms should prompt me to call 911 or my local emergency number?
- What restrictions do I or my child need to follow?
- Do you expect my child's symptoms will improve with age?
- If I plan to have more children in the future, are they at increased risk of this condition?
- How can I find other people who are coping with epidermolysis bullosa?
- Where can I find additional information and resources?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions that arise during your appointment.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to talk about in-depth. Your doctor may ask:
- When did you first notice the blistering?
- What parts of the body have been affected?
- Does anything in particular seem to trigger blistering? For example, is it made worse by heat?
- Has the affected person developed sores where bandages or adhesive tape has been applied?
- Have you noticed other signs or symptoms in addition to blistering?
- Does eating or swallowing seem to cause pain?
- Has the voice of the affected person sounded hoarse?
- Has anyone in your family had a condition marked by significant blistering?
- Has the affected person been diagnosed with any other medical conditions?
What you can do in the meantime
In the time leading up to your appointment, you can minimize the risk of your child developing new blisters by:
- Lifting or touching your child only very gently
- Keeping your home consistently cool
- Keeping your child's skin moist with lubricants, such as petroleum jelly
- Dressing your child only in soft materials
- Keeping your child's fingernails short
Call your doctor immediately if you see signs of possible infection around a blister.
Aug. 22, 2014
- Fine JD, et al. Inherited epidermolysis bullosa: Updated recommendations on diagnosis and classification. Journal of the American Academy of Dermatology. In press. Accessed April 9, 2014.
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- Pride HB, et al. What's new in pediatric dermatology? Part 1. Diagnosis and pathogenesis. Journal of the American Academy of Dermatology. 2013;68:885.e2.
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- Epidermolysis bullosa. National Institute of Arthritis and Musculoskeletal and Skin Diseases. http://www.niams.nih.gov/Health_Info/Epidermolysis_Bullosa/. Accessed April 10, 2014.
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- Lebwohl MG. Treatment of Skin Disease. 4th ed. Philadelphia, Pa.: Elsevier Saunders; 2014. http://www.clinicalkey.com. Accessed April 10, 2014.
- Pope E, et al. A consensus approach to wound care in epidermolysis bullosa. Journal of the American Academy of Dermatology. 2010;67:904.
- Gonzalez ME. Evaluation and treatment of the newborn with epidermolysis bullosa. Seminars in Perinatology. 2013;37:32.
- Lakdawala N, et al. The role of nutrition in dermatologic diseases: Facts and controversies. Clinics in Dermatology. 2013;31:677.
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- Healthcare problems. Dystrophic Epidermolysis Bullosa Research Association. http://www.debra.org/healthcare. Accessed June 10, 2011. Accessed April 10, 2014.
- Hand JL (expert opinion). Mayo Clinic, Rochester, Minn. May 8, 2014.
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