This Friday, the CAEB assembly hall hosted the I Balearic Conference on Ehlers-Danlos Syndrome and Hypermobile Spectrum Disorderwhich welcomed various testimonies from doctors, patients and experts on these disorders, as well as the presence of the president of the national association ANSEDH, Mr. Angeles Diazthe delegate to the Balearic Islands, Marguerite Peraltaand the Minister of Health, Manuela Garcia.
The day allowed us to contextualize the Ehlers-Danlos syndrome and diagnose its current situation in the Balearic Islands. Among its protagonists was the master class of Dr. Antoni Bulbenaspecialist in psychiatry and president of the Medical Consultative Commission of ANSEDH, who spoke sleep disorders in Ehlers-Danlos syndrome.
“Sleep disturbances are common symptoms, but little taken into account in this syndrome. These can manifest themselves as both a lack of sleep and excess.but especially for the poor quality of the same. This impacts 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 his 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 diagnosis“.
Finally, the doctor Blanca Martinezspecialist in family and community medicine at the Son Pisà Health Center in Palma, valued “the responsibility and privilege of primary care support” with patients with Ehlers Danlos syndrome, as well as “the generosity and courage of people suffering from a rare disease.” He says it is essential role played by “the community as a therapeutic tool”.
The day is part of the collaboration agreement between the CAEB and ANSEDH, the objective of which is to give visibility, inform and raise awareness about this type of disorder derived from an affectation of the connective tissue, of genetic and hereditary origin, as well as to promote support among the economic fabric.
ANSEDH is a non-profit state entity, integrated into the Spanish Federation of Rare Diseases (FEDER), which aims to raise awareness among public opinion and public and private institutions of the problems that this disease causes in patients, families and society, to stimulate and promote scientific research on Ehlers-Danlos syndrome and its consequences.
The CAEB, within the framework of the Social Responsibility action and with the aim 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 raising visibility and awareness of Ehlers-Danlos syndromelike a rare disease and promote business support. All this under the protection of Sustainable Development Goal No. 3 Health and well-being and No. 10 Reduction of inequalities of the UN 2030 Agenda, reports the employers’ association in a press release.
