This Friday, the CAEB assembly hall hosted the I Balearic Conference on Ehlers-Danlos Syndrome and Hypermobile Spectrum Disorderwhich featured different testimonies from doctors, patients and experts in these disorders, as well as the presence of the president of the national association ANSEDH, M. Ángeles Díazthe delegate in the Balearic Islands, Margarita Peraltaand the Minister of Health, Manuela García.
The day has allowed us to contextualize Ehlers-Danlos Syndrome and diagnose its current situation in the Balearic Islands. Among its protagonists, it had the master class of doctor Antoni Bulbenaspecialist in Psychiatry and president of the ANSEDH Medical Advisory Committee, who discussed sleep disorders in Ehlers Danlos Syndrome.
«Sleep disorders are common symptoms, but they are little attended to in this syndrome. These can be manifested by both lack of sleep and excess.but, above all, for the poor quality of the same. This has an impact on concentration, fatigue and, in general, the quality of life of patients. These disorders are often underdiagnosed and undertreated in the context of Ehlers-Danlos Syndrome,” Bulbena said.
For her part, the doctor Lilian Lopezspecialist in Rheumatology at the Son Llàtzer Hospital, focused on “highlighting the need to disseminate the pathology among professionals for greater recognition and in the role of the rheumatologist in the diagnosis».
Finally, the doctor Blanca Martíneza specialist in Family and Community Medicine at the Son Pisà Health Center in Palma, valued “the responsibility and privilege of support from Primary Care» with patients with Ehlers Danlos Syndrome, as well as “the generosity and courage of people who suffer from a rare disease.” In his opinion, it is essential role played by “the community as a therapeutic tool”.
The day was framed within the collaboration agreement between CAEB and ANSEDH, whose objective is to give visibility, inform and raise awareness about this type of disorders derived from an affectation of the connective tissue, of genetic and hereditary origin, as well as to promote support among the business fabric.
ANSEDH is a state-level non-profit entity, integrated into the Spanish Federation of Rare Diseases (ERDF), which seeks to raise awareness among public opinion and public and private institutions about the problems that this disease causes in patients, families and society, to stimulate and promote scientific research into Ehlers-Danlos Syndrome and its consequences.
The CAEB, within the framework of the Social Responsibility action and with the purpose of promoting the commitment of Balearic companies with third sector entities that work for the most vulnerable people, collaborates with ANSEDH with the aim of contribute to giving visibility and raising awareness about Ehlers-Danlos Syndromeas a rare disease and promote business support. All of this under the protection of Sustainable Development Goal No. 3 Health and well-being and No. 10 Reduction of inequality of the UN Agenda 2030, the employers’ association reports in a statement.
