Children with Epidermolysis Bullosa (EB), also known as “Butterfly skin” come across a lot of difficulties and you can help to build smiles on them through the charity shop. Bellow we will give you the details to be part of this beautiful work.
The disease is characterized by extreme fragility of the skin which causes the skin to blister, creating open wounds at the lightest touch. Painful blisters form on the skin and the inner body linings (mouth, esophagus, airways and the inside of the eyelids) EB leads to a severe disability as those affected lose the use of their hands and feet because of the constant open wounds and the retraction of the skin.
EB patients become totally dependant on their carer as they must be covered in protective bandages every day. This is an extremely slow and painful process.
DEBRA Spain is the Association for Epidermolysis Bullosa in Spain, founded in 1993 by parents of children affected by EB in Spain and in Portugal.
The charity has been declared an organization of public interest by the government: this means we adhere to total transparency and an annual audit of all our accounts and events. DEBRA Spain employs 2 nurses, 1 psychologist, 1 social worker and 2 event and project managers. We are here to offer healthcare advice and support to people with EB, their families, and carers as well as to act as a guide for social services professionals.
“We act as a medium for information on EB in all areas on both a national and international level. Advising schools, workplaces, healthcare advisers, etc. We develop and finance research into possible treatment. We act as a forum for networking between people affected by the disease. We raise awareness and support. The charity’s head office is based in Marbella but we have delegates in 7 other provinces.”
DEBRA Spain now manages 4 charity shops with over 100 volunteers. This is why we need your help
Those affected by EB and their families come across two main obstacles on a daily basis. Lack of awareness Because EB is a rare disease and babies born with the condition often suffer from a serious lack of knowledge and understanding by healthcare professionals. This leads to inaccurate diagnosis and often incorrect treatment which can lead to further pain and cause serious harm.
The lack of information provided to parents leads to further isolation and uncertainty lack of resources. The national health service does not offer the specialist medical assistance which is essential to people with EB. They do not supply the bandages and daily treatment, physiotherapy, and other all important resources.
The financial burden is substantial and often impossible to bear for many families.
DEBRA Spain needs to:
- Raise awareness both in the health sector as well as amongst the public
- Raise funds to offer help and support where the public administration system fails. Charity shops that make real difference Charity shops are fundamental to the workings of the butterfly children charity
- They raise awareness and provide a means of direct contact with the public.
- They help to raise essential funds which are so important for the ongoing development of the charity. A charity shop also offers fantastic opportunities within a community
- It is an ideal place to become a volunteer and to make people be into something really worthwhile.
- It also encourages the recycling of clothes and other objects which would otherwise be discarded.
- Debra Spain offers the sale of quality clothing and goods at discounted and affordable prices.
To find out about more projects about charity shop check out our blog.