Wednesday 25 October was International Butterfly Skin Day, a day which aims to raise awareness about a fairly unknown condition.
Epidermolysis bullosa, commonly known as Butterfly Skin, is a rare and incurable disease characterised by extremely fragile skin which can be wounded or blistered by any physical contact. It is estimated that between 3,000 and 5,000 people in Spain suffer from this condition and approximately 10 babies a year are born with it, yet very little is known about the illness. As a result, sufferers experience a very poor quality of life with frequent wounds that could be avoided if more was known about the condition. A study on the status of the health and social needs of people with rare diseases in Spain, (ENSERio), revealed that 56 per cent of participants have received inadequate treatment by healthcare professionals.
However, in July this year, the Ministry of Health, Social Services and Equality took the decision to open two reference centres for Epidermolysis bullosa (EB) in La Paz University Hospital, Madrid and Sant Joan de Déu-Clinic Hospital, Barcelona. This news could be life-changing for some.
The centres were unveiled on Wednesday in an official ceremony at the La Paz Children's Hospital in Madrid. The reference centres are formed by teams of nurses, dermatologists, paediatricians and surgeons with the support of other disciplines such as haematologists, cardiologists and nutritionists.
Head of La Paz Paediatric Dermatology department and head of the reference centre, Dr. Raul de Lucas, opened the presentation by explaining the current situation and characteristics of Butterfly Skin. He believes that “it is fundamental that the patients receive multidisciplinary support and that it is done in close collaboration with DEBRA Butterfly Children Charity”.
Nieves Montero, president of Spanish association DEBRA, stressed how important the reference centres, which will carry out research and provide specialist consultations on EB, are for the Butterfly Skin sufferers and their families. However, Montero pointed out “this is just a step, there is still a long road ahead to ensure the best possible life for those affected with Butterfly Skin”.
The Infanta Elena, the king's sister, who attended the ceremony, congratulated the charity for promoting the cause and thanked all those who have made the creation of the reference centres possible. She encouraged all medical professionals to continue their daily work in researching and treating rare diseases in order to provide a better future for sufferers.
Since the foundation of the charity, DEBRA Butterfly Children Charity has fought for the opening of a reference centre like the ones in Madrid and Barcelona for those with the condition to visit and specialist health professionals to work from. It is believed that around 50 people in Andalucía are affected by EB so ideally, a third reference centre would be opened in the region in the future.
It is hoped that as a result of the two reference centres, the quality of life for people with Butterly Skin will vastly improve.