The Butterfly Network Here 2 Help: March 2015

Sunday, 29 March 2015

Been a while....

Apologies for such a long gap in posting. Between charity work for Eb, own business, family life, a new grandson and running a home, life is rather busy!!

So much has happened so let me share in short some moments from the last 2 years....

We lost many Butterflies, young & old, which breaks your soul with each announcement.
The Butterfly Network Here2Help continued with a mission to supply those without wound care which has grown in strength over the last 2 years.
We made many new friends around the world.
A trip to Vietnam with an amazing charity www.facebook.com/HelpingHow is arranged to take wound care & meet some of the Eb babies/children who have received our help.
And last but not least, we partnered with an amazing registered UK charity JonnyKennedyNorthEast

www.justgiving.com/Jonnykennedynortheast

Jonny Kennedy North East is a Registered Charity No. 1119765

Will update in full asap. Thank you for being here in support of Eb families worldwide x

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.