Can you spare as little as £1.00? Every single penny adds up and will help this Community more than you would ever understand. Please consider helping...
What is EB?
Epidermolysis Bullosa (EB) is a rare genetic skin condtion. In people with EB, Any trauma or friction to the skin can cause painful blisters and skin to sheer off from the slightest touch including from clothing. They live a life of extreme pain, daily bandage changes to prevent infections that may be fatal. In most cases, symptoms of EB are present at birth in the form of huge patches of skin missing on limbs.
"The reason a butterfly is our symbol is the skin is as fragile as a butterflies wings"
What is Ichthyosis?
Ichthyosis is a family of disorders characterized by dry or scaly and thick skin. "Ichthy" comes from the greek word for fish. This condition is called "Ichthyosis" because the thickened skin sometimes has the appearance of fish scales.
Ichthyosis may be either inherited or acquired. Inherited Ichthyosis is usually apparent during the first year of life, often at birth, and continues to affect a person throughout life. Acquired Ichthyosis may occur as the result of medical peoblems including hormonal, inflammatory, or malignant disorders.
For September 2014 is to take a group of Teenagers suffering both these skin condtions to Annual Camp UK. Activities, Accommodation and all meals will be provided along with some parent activities if possible. These children spend most of their lives wrapped in bandages and unable to join in with peers at school for fear of damage caused to their skin. But i feel very strongly about how important it is to have opportunities for people with Epidermolysis Bullosa & Ichthyosis along with their families to meet and share experiences. For more information please visit my website: www.thebutterflynetworkhere2help.com
An insight to why Annual Camp UK is so valuable to our Teenagers: http://www.thebutterflynetworkhere2help.com/1/post/2013/08/what-eb-camp-means-to-me-by-ariana-usa.htmlAriana has Epidermolysis Bullosa.
If your able to help in any way possible you will be helping to create priceless memories for these children and parents alike. No donation is too small, even as small as £1.00 will help towards taking these children away for the weekend. Making memories is vital. Many thanks in advance.