Epidermolysis bullosa

The outcome depends on the severity of the illness. Mild forms of epidermolysis bullosa improve with age. Scarring from several types of epidermolysis bullosa can restrict mobility significantly and, therefore, impair daily activities. Lethal forms of the epidermolysis bullosa have a very high mortality rate. (See Complications section.)

Complications:

Infection, including sepsis
Esophageal stricture
Periodontal disease
Loss of function of hands and feet
Eye disorders, even blindness
Muscular dystrophy
Severe malnutrition secondary to feeding difficulty, leading to failure to thrive
Anemia
Squamous cell skin cancer -- if someone with epidermolysis bullosa survives childhood, metastatic squamous cell cancer of the skin is the most common cause of death. This skin cancer occurs in those with recessively inherited dystrophic epidermolysis bullosa. Those with epidermolysis bullosa often develop this skin cancer between the ages of 15 and 35. In addition, the skin cancer can occur anywhere on the skin. In other words, unlike the general public, it is not more likely to happen in sun-exposed areas.
Death -- death rate is as high as 87% in the first year of life for infants with the lethal form of junctional epidermolysis bullosa. On the other hand, dominantly inherited simplex and dystrophic epidermolysis bullosa, and mild forms of junctional epidermolysis bullosa may not lessen life expectancy at all.

Calling your health care provider:

If your infant exhibits any blistering shortly after birth call your health care provider. If you have a family history of epidermolysis bullosa, further interaction with your health care provider or a genetic counselor may be appropriate.