OUR CLAIMS
We need more support for our families
Our goals
At DEBRA we work hard every day to improve the quality of life for our families. There is still so much work to be done.
A big part of what we do is to campaign on behalf of our families to ensure they receive the best possible level of care from the National Health Service.
Our campaigns include:
Health care
Health care
Early intervention is fundamental to the well being of people with Butterfly skin: we are campaigning for the provision of nursing support at home to help with daily wound care treatment, access to free physiotherapy to slow down the physical deterioration, free dentistry, speech therapy and mental health support from a young age.
Mental health care
Psychological support is essential to help with the process of coming to terms with the condition and the potential outcome. The impact of this condition causes extreme emotional distress and professional support is invaluable to help with the stress, anxiety and fear that come with this.
Mental health care
Social issues
Social issues
Acceptance and integration into the school system is key to young children. Schools can only take children with EB if they have the right human and material resources to ensure their safety and inclusivity in class. These should be provided by the state system so that children can attend school.
We are requesting that the Ministry of work and Spanish businesses agree to the measures necessary to include people with Butterfly Skin in the work place.
Coping with EB inflicts tremendous financial challenges on families. Currently the benefits available are not enough for families to face the many challenges of a life with Butterfly Skin.
We urge the government to take action and offer more support to families.
Research
Butterfly Skin currently has no cure. People with Butterfly Skin live in pain every day of their lives and it is described as one of the cruellest conditions that exists.
We urge the government to help by supporting the current international clinical studies and to provide funding for research.