Health workers and patients of NOLH unite their voices for equal access to culture

Achieving equal access to culture, and that at least 25 percent of the films that receive funding have an audio description and audio subtitling in the languages ​​of production is the central claim that the Léber Optic Nerve Atrophy Association (ASANOL), …

Achieving equal access to culture, and that at least 25 percent of the films that receive funding have an audio description and audio subtitling in the languages ​​of production is the central claim that the Léber Optic Nerve Atrophy Association (ASANOL), together with health professionals, patients and relatives of those affected by NOLH, have presented it through the #Cuentamepeliculas campaign.

As a society we have a clear opportunity to continue breaking down socio-sanitary barriers in rare and ultra-rare diseases, such as the pathology of Léber’s optic nerve atrophy or LHON. Visually impaired people enjoy movies or documentaries as much as others, but to fully understand them we need audio description and audio subtitling of what is shown on the screen, an option that is not given in most audiovisual productions“, Explain Joan Jose Bestard, President of ASANOL. And continues, “In line and in tune with the effort undertaken by our colleagues in Europe from the European Blind Union (EBU), with #Cuéntamepelículas we raise our voice to request that at least 25 percent of the films that receive funding have an audio description and subtitles audio in production languages“.

During the Mitochondrial Disease Awareness Week, and the commemoration of the European Day of LHON, on September 19, patients and organizations also come together with the objectives of stimulating scientific research; provide information about this disease to those affected and their families in order to achieve its normalization; sensitize public opinion and the Administrations about the problems of prevention, diagnosis and treatment of NOLH; while continuing to break down socio-sanitary barriers.

In this sense, Bestard stresses, “this initiative is, at the same time, a new opportunity to make the Administrations and the public opinion aware of pressing problems for ussuch as the need for access to an early diagnosis or to treatments financed by the national health system, despite the fact that there are already options that allow its development to be controlled from early stages“.

For all these reasons, ASANOL, the main organization that works on Léber optic nerve atrophy and which has 95 affected people among its members, has joined the voices of patients, affected people and their families to raise a Manifesto addressed to the health authorities and society in general in which they include, among others, the need to “more egalitarian access to culture, such as the cinema, but also better access to information, employment aid, early diagnosis and treatments that slow down our disease“, in the words of Ignatius Muela, affected and vice president of ASANOL.

We consider key the awareness of the Administration on these points“, indicates Muela, since it is important to bear in mind that LHON generates biopsychosocial changes, both in the affected person and in the family, with emotions playing a very important role. It should not be forgotten that the majority of people who develop the disease present severe visual impairment, which normally appears when we are young. Although visual impairment is reversed in some cases, for most of us it is lifelong and that means we have to learn to live with whatever level of vision we have left.“.

Leber’s Hereditary Optic Neuropathy (LHON) is a rare, mitochondrial and neurodegenerative disease that affects the optic nerve and is characterized by sudden loss of vision, mainly in young adults who have inherited any of the causative mutations. lorraine castle, Head of the Department of Neuro-Ophthalmology and the Teaching Department of the Barcelona Ophthalmology Center- ICR Explain, “the social impact of this disease is enormous, since, in the vast majority of cases, it involves young men who, in a matter of a few months, suffer severe and permanent loss of vision in both eyes“. And underlines, “one of the current challenges in LHON is early diagnosis. Despite the fact that we have come a long way in recent years, it is still a little-known disease among neurologists and ophthalmologists, so it is not usually thought of. In most cases, the patient goes through different specialists and innumerable visits until the diagnosis is reached, with the uncertainty and emotional discomfort that this entails and the lack of access to a treatment that can improve the prognosis of the disease. For all these reasons, early diagnosis is key.“.

Health workers and patients of NOLH unite their voices for equal access to culture