YOU can help stop EB. It begins with awareness. Help spread #EBawareness, by writing EB on the palm of your hand and take a picture with your EB hand in a “stopping” gesture, and post the pic to Facebook and/or Instagram with #stopEB.
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.
Why am I doing this? Because the daughter of a close friend has EB, and she is not alone.
I challenge all of you to help educate others about Epidermolysis Bullosa and to help support research by making a donation to http://irefuseEB.org/
You can help by sharing this picture on your timeline and raising #ebawareness and educating others