DEBRA nurse, Esther and social worker, Juanma travelled to Ceuta to deliver information on EB to health care professionals with the collaboration of the National Institute for health (INGESA). It is essential to raise awareness amongst medical professionals within the National Health Service as this contributes to improving the quality of care available for families. In 2018 we trained 250 professionals in Spain.
These seminars have helped to raise awareness on the importance of providing the highest level of care across all of the different health centres in the area. Esther made reference to the “ignorance and misunderstandings” which surround the disease and the importance of access to specialists.
EB can lead to a host of different health complications: difficulty swallowing, the fusion of fingers and toes, anaemia, unbearable pain, etc. Through these sessions we were able to provide up to date information on the best available treatments and care.
We spoke in depth about the consequences of mental health issues which arise as a consequence of the rejection that people with EB encounter on a daily basis. It is really important to underline that EB is not contagious and that raising awareness is the only way to overcome this false impression.
Our social worker, Juan Manuel wanted to underline the different benefits available for families: from disability allowances to care and treatment. It is really important to remember that as well as the health issues there are many other psychosocial effects, which have an emotional impact on families.
Our main aim is to continue to be there for families from the beginning, to support and care for them through the very many difficult stages of their lives.