BUTTERFLY SKIN (Epidermolysis bullosa) is a rare and incurable condition characterised by extremely fragile skin up until the point that even a simple hug or daily activities like walking and eating can cause blisters and wounds.
Little is known about the cause or treatment of the disease but a decision made by the Ministry of Health, Social Services and Equality, La Paz University Hospital, Madrid, Sant Joan de Déu-Clinic Hospital, Barcelona in collaboration with the Provincial Hospital Clinic of Barcelona will introduce first Reference Centres for Epidermolysis bullosa (EB) in Spain
A Reference Centre is a health centre that dedicates its work fundamentally to the care of certain recognised conditions and has the mission of providing multidisciplinary team care.
This news is a breakthrough for all those affected with Butterfly Skin in Spain, and was revealed at an official ceremony at the La Paz Children’s Hospital, Madrid.
The presentation took place in the meeting Room of La Paz Children’s Hospital, Madrid where Dr Raul de Lucas, Head of the La Paz Paediatric Dermatology department and Head of the Reference Centre explained the characteristics of the condition, the current situation and the ongoing research taking place at the Institute of Investigation (IDIPAZ).
De Lucas believes that “it is fundamental that the patients receive multidisciplinary support and that it is done in close collaboration with the Debra-Butterfly Children Charity.”
Nieves Montero, herself a resident of Marbella is President of the Spanish Association of EB Debra-Butterfly Children Charity and was delighted to attend the ceremony.
Attending alongside a number of medical professionals, was Princess Elena of Spain, project Director of the Mapfre Foundation which has been collaborating with the charity via the ‘Donate a Euro’ campaign involving more than 4,600 employees of Mapfre.
It is believed that the establishment of these reference centres will not only help to highlight the needs of the children so badly affected but will also lead in the long term to an extension of knowledge in how to treat the condition and bring some relief to those who suffer from its debilitating effects.