What is EB awareness?
National Epidermolysis Bullosa Awareness Week, held annually from October 25 – 31, is a time to increase awareness of Epidermolysis Bullosa, to promote the need for a cure, and to spur advocacy on behalf of families suffering with the emotional, financial, and physical burden of Epidermolysis Bullosa.
Why do people with EB have deformed hands?
Healing is associated with scarring and the formation of contractures and milia. Following repetitive trauma (friction), this process leads to severe hand deformities with digits contracted in flexion, the thumb contracted in adduction and pseudo-syndactyly.
What is EB in a baby?
A child with epidermolysis bullosa (EB) has an inherited skin disorder that causes blisters after even the mildest trauma. EB is never contagious because it is a genetic disease. Most commonly, EB causes blisters on the skin, but EB can also affect the mouth, esophagus, lungs, muscles, eyes, nails and teeth.
Does EB get better with age?
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. Fortunately, the milder forms are most common.
Is EB a rare disease?
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.
Is EB disease fatal?
Junctional epidermolysis bullosa generally becomes apparent at birth and may be severe. Large, ulcerated blisters are common to junctional epidermolysis bullosa and can lead to infections and loss of body fluids. As a result, severe forms of the disease may be fatal.
Is there a cure for EB?
There’s currently no cure for EB, so treatment aims to relieve symptoms and prevent complications developing, such as infection. A team of medical specialists will help you decide what treatment is best for your child and offer advice about living with the condition.