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We are the national charity for people affected by Epidermolysis bullosa or EB, and we are an officially registrated charity which has been awarded the recognition of the Home Secretary. The team is comprised of 38 people all motivated by working for the same important cause.
Epidermolysis bullosa, commonly known as EB, is a rare, genetic and currently incurable disease. The main characteristic of the condition is the extreme fragility of the skin. The skin is as fragile as a butterfly’s wing. The lightest touch can cause open wounds, blistering and peeling of the skin. Simple actions such as walking and eating can be extremely painful. The European Reference Centre for EB estimates that 1 in 17000 births are affected by EB. In Spain there are between 500 and 700 people currently living with EB.
Imagine for a moment, without prior warning, your baby is born with a rare condition. Their skin is as fragile as the wings of a butterfly. The lightest touch causes pain and open wounds and this is set to continue for every day of their short lives
The hospital has little information to share because of the rarity of the disease and it is unlikely that they will have previously dealt with a case of a newborn with Epidermolysis bullosa
It is because of this that the DEBRA, the Butterfly Children´s Charity was created to support, inform and to accompany both families and health care professionals.Life is easier if we can share the journey.
How do we help?
- Thanks to our team of psychologists, nurses and social workers we help resolve problems and answer any questions on a daily basis. We are here to offer our support at the most difficult times.
- We are raising awareness with the hope that one-day in the near future people will not move away from someone with EB for fear of catching the disease.
- We share experiences and knowledge and our aim is to encourage mutual support between families.
- We participate in and co-finance important research projects.
- We help to improve knowledge and understanding for professionals working in health care, social care and the education system.
- We strive to remove the obstacles facing families on a daily basis, like access to specialist bandaging materials to treat wounds.
Projects in progress:
Well-being: Every day we respond to contact from both family members and medical professionals. Our team of nurses, social workers and psychologists are there to help and act as a lifeline to answer questions and offer support by both phone and email. In 2017 we responded to 868 queries.
Newv-borns with Butterfly Skin: When a child is born with an unknown disease and areas of the body without skin, joy is quickly replaced by fear and confusion. One of the most joyful days in the life of any new family is transformed. Questions abound and these are often left unanswered. Through the “Born with Butterfly Skin” programme, our expert team travels to visit the family alongside the medical professionals, in order to provide all the information and support they will require.
Debra at home: The quality of life of our members and the care they receive is dependent on the relationship that they have with their environment and the resources available to them. Through our "Debra at Home" programme, our team visit the family in their own home offering advice on how to improve their day-to-day quality of life – from pain relief during treatments, to methods and products that help them to be independent when dressing, eating, etc.
With you in La Paz Hospital: With the aim of improving the care and treatments received by patients and their families in the national health system in 2016, two of our specialist Debra nurses spent some time in the La Paz Hospital with dermatologist Raul de Lucas working hand-in-hand and sharing experience and information with the specialist in the hospital.
National Family meeting: When you are suffering from a rare disease like Butterfly Skin, knowing that you are not alone and that there is always someone there to listen to your fears is as important as offering your support to others with the same condition. The National meeting is a reunion between families in which everyone from the youngest to the oldest members of the group participate in 3 days of seminars, workshops and activities. This is a special opportunity to share knowledge and experiences.
Support in Difficult Situations: The illness is frequently accompanied by complex issues, that are difficult to overcome for both families and medical professionals involved. End of life, birth or just unexpected complications- the DEBRA team aim to always be there to confront these challenging situations.