The Butterfly Network Here 2 Help: Blurgh

Thursday 19 September 2013

Blurgh

Morning all hope everyone's okay. Woke up for college (just about) very tired and very sore today could of done with staying on bed but as they say no rest for the wicked! Didn't sleep very well last night either which doesn't help :( with the medicine that I take for pain and to help me sleep still didn't help just shows how bad the pain can get! AND to top it off my transport for college was really late.

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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.