What is EB?
There’s currently no cure for epidermolysis bullosa. For now, treatment focuses on addressing the symptoms, including pain prevention, wound prevention, infection and severe itching that occurs with continuous wound healing.
Epidermolysis Bullosa (ep-ih-dur-MOL-uh-sis buhl-LO-sah) is the worst disorder you never heard of.
Imagine your child with extremely painful wounds similar to burns covering most of his or her body. Imagine never being able to hold your child tight because if you did, their skin would blister or shear off. This is life with EB.
1 out of every 50,000 live births is affected with some type of EB. Because EB is an inherited condition (it cannot be caught), which is passed on genetically from parents to children, first time parents often do not know that they are carriers and will have no prior warning that the child will be affected until birth. At it’s mildest, the blistering is confined to the hands and feet making holding things and walking extremely painful. In more severe forms all the body is affected and the wounds heal very slowly, giving rise to scarring, physical deformity and significant disability. For many affected by the condition the blistering is not limited to the skin, but also affects the inner body linings, such as the mouth and esophagus. The eating of solids is in these cases almost impossible and the disposal of the body waste incredibly painful. People with the more severe types of EB also have an exceptionally high risk of developing skin cancers, shortening their lives by approx. 30-40 years. In it’s most severe form,
the condition is fatal in infancy.
There is as yet no effective treatment or cure.
One in 227 of us has the defective gene that causes EB.
To learn more, please visit these sites by clicking the links:
I Refuse EB
EB Research Partnership
Thank you for taking the time to learn about EB.
Awareness is the only path to a CURE