What is EB?

Epidermolysis Bullosa (EB) is a rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma.

This condition is not contagious.

An estimated 1 out of every 20,000 live births are affected with some type of EB. 

The disorder occurs in every racial and ethnic group throughout the world and affects both sexes equally.

There are three main forms of inherited EB: EB Simplex, Junctional EB and Dystrophic EB. 

These different subtypes are defined by the depth of blister location within the skin layers. 

Blister formation of EB simplex is within the epidermis. Sometimes EB simplex is called epidermolytic. 

Blister formation in Junctional EB is seen at the level of the lamina lucida within the basement membrane zone. Dystrophic EB or dermolytic EB is a scarring form of EB which occurs in the deeper tissue at the level the lamina densa or upper dermis.

In severe EB, blisters are not confined to the outer skin. They may develop on the soft tissues (mucous membranes) inside the body such as the linings of the mouth, esophagus, stomach, intestines, lungs, bladder and genitals. The extent of tissue involvement experienced by an individual is usually determined by the severity of the disease and the subtype present.

How is EB Treated?

Because EB involves many systems of the body, parents and health professionals must take a team approach to the treatment of an EB patient. Intense and total patient care often must be provided, particularly for young children. The severe forms of EB require meticulous nursing care which is similar to that given to burn patients. Much of this care is often provided by the parents; however, the education of all people who have contact with the patient is essential, including the primary care physician, the dermatologist, the nurse, the pediatric dentist, the specialist in gastrointestinal (digestive) diseases, the dietitian or nutritionist, the plastic surgeon, the psychologist or social worker, and the genetic counselor, as well as teachers, relatives, baby sitters, and others.

Although there is no cure for EB, many complications can be lessened or avoided through early intervention. In all cases, treatment of EB is directed towards the symptoms and is largely supportive. This care should focus on prevention of infection, protection of the skin against trauma, attention to nutritional deficiencies and dietary complications, minimization of deformities and contractures, and the need for psychological support for the entire family. Many persons with milder forms have minimal symptoms and may require little or no treatment.

I was tested when I was pregnant with my son in 2001- I am a carrier.

I fundraise in honor & remembrance of Tyler & try to bring awareness so we can find a cure for all kids !!!

No child should ever have to suffer from EB!

Please help me find a cure!!!