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Epidermolysis bullosa

Epidermolysis bullosa (ep-ih-dur-MOL-uh-sis buhl-LOE-sah) is a rare condition that causes fragile, blistering skin. The blisters may appear in response to minor injury, even from heat, rubbing or scratching. In severe cases, the blisters may occur inside the body, such as the lining of the mouth or stomach.

Epidermolysis bullosa is inherited, and it usually shows up in infants or young children. Some people don’t develop symptoms until they’re teens or young adults.

Epidermolysis bullosa has no cure, but mild forms may improve with age. Treatment focuses on caring for blisters and preventing new ones.

Epidermolysis bullosa symptoms include:

Usually epidermolysis bullosa blisters are noticed during infancy. But it’s not uncommon for them to appear when a toddler first begins to walk or when an older child begins new activities that cause more friction on the soles of the feet.

When to see a doctor

Contact your health care provider if you or your child develops blisters for an unknown reason. For infants, severe blistering can be life-threatening.

Seek immediate medical care if you or your child:

Epidermolysis bullosa is caused by an inherited gene. You may inherit the disease gene from one parent who has the disease (autosomal dominant inheritance) or from both parents (autosomal recessive inheritance).

The skin is made up of an outer layer (epidermis) and an underlying layer (dermis). The area where the layers meet is called the basement membrane. The types of epidermolysis bullosa are mainly defined by which layers separate and form blisters. The skin injury might be brought on by a minor injury, bump or nothing at all.

The main types of epidermolysis bullosa are:

Epidermolysis bullosa acquisita is distinct from these conditions, as it isn’t inherited and it’s rare in children.

The major risk factor for developing epidermolysis bullosa is having a family history of the disorder.

Epidermolysis bullosa can worsen even with treatment, so it’s important to spot signs of complications early. Complications may include:

It’s not possible to prevent epidermolysis bullosa. But these steps may help prevent blisters and infection.

Your health care provider may identify epidermolysis bullosa from the skin’s appearance. You or your child may need tests to confirm the diagnosis. The tests may include:

Treatment for epidermolysis bullosa may first include lifestyle changes and home care. If these don’t control symptoms, your health care provider might suggest one or more of the following treatments:

Medications

Medications can help control pain and itching. Your health care provider may also prescribe pills to fight infection (oral antibiotics) if there are signs of widespread infection, such as fever and weakness.

Surgery

Surgical treatment may be needed. Options sometimes used for this condition include:

Rehabilitation therapy

Working with a rehabilitation specialist can help in learning to live with epidermolysis bullosa. Depending on your goals and how movement is limited, you might work with a physical therapist or an occupational therapist.

Potential future treatments

Researchers are studying better ways to treat and relieve the symptoms of epidermolysis bullosa, including:

You can take steps at home to care for blisters and prevent new ones from forming. Talk with your health care provider about how to care for wounds and provide good nutrition.

Caring for blisters

Your health care provider can show you how to care for blisters properly and advise you on ways to prevent them. Ask about safe ways to drain blisters before they get too large. Ask about recommended products for keeping the affected areas moist. This helps with healing and preventing infection.

In general, take these steps:

Providing good nutrition

A varied, nutritious diet promotes growth and development in children and helps wounds heal. If blisters in the mouth or throat make it difficult to eat, here are some suggestions:

Talk with your health care provider about how you or your child can get all the needed nutrients and vitamins.

Having a child with epidermolysis bullosa affects every aspect of your life. It can be emotionally distressing for you, your child and family members. Children with this condition need the lifelong support of their health care team and families.

Treating and preventing blisters and worrying about complications can be stressful. You may find it helpful to share concerns and experiences with families in similar circumstances. Ask your health care provider about epidermolysis bullosa support groups in your area. If joining a support group isn’t for you, ask about counselors, clergy or social workers who work with families coping with epidermolysis bullosa.

Ask your health care provider to suggest stress-reduction resources or consult with a psychologist to learn stress-reduction techniques. These approaches may help you cope.

You may be referred to a doctor who specializes 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 health care provider if a specialized epidermolysis bullosa center is available to you.

No matter what type of health care provider you see first, here’s some information to help you prepare for the appointment.

What you can do

Questions to ask your doctor

What to expect from your doctor

Your health care provider is likely to ask you a number of questions. Being ready to answer questions such as the following may reserve time to go over any points you want to talk about in-depth:

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:

Call your health care provider immediately if you see signs of infection around a blister.

© 1998-2024 Mayo Foundation for Medical Education and Research (MFMER). All rights reserved.

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