EB International Awareness Day
Bringing together organisations from over 112 countries around the world to raise awareness for Epidermolysis bullosa, this global union serves not only to underline the obstacles that children, adults and their families face on a daily basis, but also to show their strength and courage in the face of such extreme adversity.
EB is a rare genetic condition that causes the skin to be as fragile as a butterfly’s wing. As soon as a baby leaves the protection of the womb, the lightest touch causes painful open wounds, extending to up to 80 per cent of the body, and leading to a life of disability and severe pain. Over 500 people are affected by EB in Spain and every year between five and 10 babies are born with the condition.
DEBRA Butterfly Children’s Charity was created to improve the quality of life for children and adults with Epidermolysis bullosa. This year, in conjunction with EB International Awareness Day on 25 October, DEBRA used the opportunity to publish a manifesto conveying the basic needs for patients and their families living with this condition that are not currently met by the national health service in Spain. More information at: www.butterflychildrencharity.com @butterflychildrencharity (Facebook / Twitter / Instagram)