RARE, incurable conditions are often overlooked by medical research in favour of those diseases which claim large numbers of victims.
It is not a matter of health specialists being uncaring but there is only so much money available although now some of it will be spent on studying Butterfly Skin (Epidermolysis bullosa) which affects children giving them extremely fragile skin which blisters and bleeds.
Even the simplest of activities can be extremely painful and the children often have to be heavily bandaged and cannot live a normal life of rough and tumble.
Little is known about the cause or treatment of the disease but parents of sufferers are delighted that the Ministry of Health, Social Services and Equality has sanctioned the La Paz University Hospital, Madrid, Sant Joan de Déu-Clinic Hospital, Barcelona in collaboration with the Provincial Hospital Clinic of Barcelona to introduce the 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 means that there will be more help and assistance for those affected with Butterfly Skin in Spain and there is the possibility that new treatments and even a cure may be found in time.
An official ceremony at the La Paz Children’s Hospital in Madrid formally announced this news in the presence of health specialists, Princess Elena of Spain, Nieves Montero an architect from Marbella who is President of the Spanish Association of EB Debra-Butterfly Children Charity alongside sufferers and their families.
Princess Elena in her role as project Director of the Mapfre Foundation has been collaborating with the charity via the ‘Donate a Euro’ campaign involving more than 4,600 employees of Mapfre to help raise much needed funds.
It is believed that the establishment of these reference centres will not only help to highlight the needs of the children 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 awful effects.