The Debra Butterfly Children’s charity joins the Spanish Federation for rare diseases (FEDER), on International Rare Diseases day, to underline the importance of their claim that asks for people with EB the right to attend schools and higher education establishments where their needs are recognized. This must be specialized and met by a team of multidisciplinary professionals in order to improve the quality of life for children with EB and their families.
EB is a rare, genetic, incurable condition that is characterised by the extreme fragility of the skin. The consequences of living with this disease go much deeper than the surface of the skin, with far reaching physical, emotional, social and psychological consequences. The complexity and rarity of the disease means that patients with the condition are often left undiagnosed and treatment is given without the information needed to ensure the safeguarding and wellbeing of the patient. The Butterfly Children’s charity is working hard to improve the quality of care and treatments available for people with this debilitating condition by raising awareness and by providing specialist training to health care professionals.
Raising awareness, training and multidisciplinary care
On the 21st of January, DEBRA, the Butterfly Children’s Charity in collaboration with the La Paz University Hospital reference centre for EB, organized the first teaching event of this kind for health care professionals. During this event the medical professionals involved talked at length about the fundamental importance of a multidisciplinary approach to the treatment of the disease. The head of infant dermatology Dr Raul de Lucas underlined the importance of improving the quality of care for patients through the training of the health care professionals at the hospital.
DEBRA, the Butterfly Children’s Charity emphasized that despite the improvements to date there are still a number of issues with regards to the current availability of genetic testing and treatments for the condition. People with EB must have access to genetic testing in order to diagnose the specific type of EB: This is fundamental for understanding the prognosis, for treatment provision, family planning and for participation in clinical trials.
Fernando Tejero, ambassador for EB, on improving visibility for the condition
The well known actor, Fernando Tejero, supported the DEBRA Butterfly Children’s Charity using the emotive “I undress myself” social media campaign to reach out to health care professionals and professionals in the education system. Tejero and Iñigo, the son of the parents who founded the charity, underlined the need to promote awareness in order to improve the quality of care available for people affected by EB.