Can adults get EB?

EB is usually diagnosed in babies and young children, as the symptoms can be obvious from birth. But some milder types of EB may not be diagnosed until adulthood.

What is the life expectancy of someone with epidermolysis bullosa?

The disease appears at birth or during the first few years of life, and lasts a lifetime. Prognosis is variable, but tends to be serious. Life expectancy is 50 years, and the disease brings with it complications related to infections, nutrition and neoplastic complications.

Can you recover from EB?

EB is rare, and it is estimated that less than one in 20,000 children has some form of EB. Often there is a family history of the condition. Currently, there is no cure for EB.

Is EB fatal?

EB can vary from minor to fatal. The minor forms causes blistering of the skin. The fatal forms affect other organs. Most types of this condition start at birth or soon after.

How painful is EB?

In general, patients with EB experience intense and unpleasant pain on the surface of the skin; the hands and feet are most commonly affected. The subtypes, recessive dystrophic EB and junctional EB reported pain qualities pathognomonic of neuropathic pain.

Why is there no cure for EB?

There is no cure for any of the subtypes of EB resulting from different mutations, and current therapy only focuses on the management of wounds and pain. Novel effective therapeutic approaches are therefore urgently required. Strategies include gene‐, protein‐ and cell‐based therapies.

How close is a cure for EB?

There is currently no cure for any form of EB, and treatment still focuses largely on wound care by protective bandaging to reduce pain and further damage, and managing complications from the risks of infection, fibrosis and poor nutritional status.

What does EB feel like?

According to the findings of the MDC researchers, this explains why EB patients are more sensitive to touch and experience it as painful. Even the slightest touch causes a stinging sensation like being stabbed with pins; the body is covered with blisters and the skin is inflamed in many places.

Can you live with EB?

The outlook for children with epidermolysis bullosa (EB) depends very much on the disease type they inherited. Some forms are mild and even improve with age, while others are so severe that a child is unlikely to live into adulthood.

Are you born with EB?

Epidermolysis Bullosa, or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB).