The Butterfly Network Here 2 Help: **NEW EMAIL ADDRESS FOR TBNH2H**

Friday, 23 August 2013

NEW EMAIL ADDRESS FOR TBNH2H

New Email address to be used from now on for correspondence and Paypal payments or Donations

thebutterflynetworkhere2help@live.com

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What is Eb?

Epidermolysis Bullosa (EB) is a group of genetic disorders that result in fragility of the skin and, in some cases, other internal membranes and organs. Blisters, open wounds and sores form as a result of the slightest touch, rub or trauma.

Certain types of EB can be fatal in infancy and others are severely life-limiting. We estimate that there more than 5,000 people with EB in the UK, and 500,000 worldwide.

EB may be inherited in either a dominant (usually one parent carries the gene for EB and is affected by the condition themselves) or a recessive form (where both parents carry the gene but are usually unaffected, so the birth of an affected child is totally unexpected).

EB can also arise through a new spontaneous mutation whereby neither parent carries EB yet the gene mutates spontaneously in either the sperm or the egg before conception.

In dominant EB, there is a 50% chance of passing the disorder to children: in recessive EB the chance is 25%.

Rarely, a severe form of EB can be “acquired” as the result of autoimmune disease, whereby the body develops antibodies to its own tissue proteins.

EB can be divided into 4 main types: Simplex, Dystrophic, Junctional and the recently classified Kindler Syndrome.

There is currently no known cure for EB.

Information taken from Debra Uk Website.