The President of the Council, Peter Martin, warmly greets Cati Martín, founder of the TeidELA association, who expresses all the satisfaction that is possible from her wheelchair. One way to seal the alliance of the insular institution with the patients and affected by Amyotrophic Lateral Sclerosis (ALS). On the occasion of World Day for the Fight against the disease, on June 21 (yesterday) the Tenerife collective has created a campaign, under the slogan Everyone against ALS, to give greater visibility to patients in the Canary Islands. The autonomous community, with 306 diagnosed cases, is fifth in absolute numbers and in the lead in proportion. Of those 306, in Tenerife there are approximately 70.
The island councilor for Social Action, Marián Franquet, and the president of TeidELA, Marcelino Martín (Cati’s brother), preside over the event to give visibility to this neurodegenerative and chronic disease that affects 3,717 people in Spain, according to data from the latest Observatory of the Luzon Foundation.
Together with them, the neurologist of the University Hospital of La Candelaria (HUC) Helena Pérez, and the psychologist Gemma Roquerías from the program for Comprehensive Care for People with Advanced Illnesses. Both expose their experience in caring for people suffering from this disease.
Marián Franquet highlights the important role played by entities such as TeidELA, which from this year forms part of the Insular Ring of Social Policies. Through this channel, an annual aid of 25,000 euros has been granted to the association.
Politics.
The counselor also highlights the actions of Sinpromi, in collaboration with TeiDELA and Fundación Luzón, to provide technical support and advice to people with ALS and their families, through talks and workshops. In addition, material or support devices are provided on loan to affected people, through the free service of the Information Center for Autonomous Living (CiVAT) and a training program has been designed to improve the visual skills of these people who will use of eye readers –tracking, fixations and visual precision–.
Marcelino Martín summarizes: «A year in an ALS patient is a lifetime. The ELA does not understand administrative procedures. It runs its course, it does not stop and it is a disease in which time makes the difference. He says it knowingly as a direct family member that he is.
The psychologist.
The psychologist Gemma Roqueíras values ”the courage of people with ALS and their families to face and adapt to so many changes and so many losses in a very short time.” She, from her empirical knowledge, emphasizes the importance of being able to “offer them an accompaniment service to meet their psychological needs.” Accompany, that is one of the keys.
The neurologist.
The neurologist Helena Pérez recalls that ALS is a neurodegenerative disease – with which she has been present since 2009 – and progressive that has no curative treatment, although there is treatment. She claims to “learn from each case and from the relatives.” He insists on concepts such as “mitigate or alleviate” because “it is possible”. In 2021, the Hospital Universitario de Canarias (HUC) treated 36 patients and the number is similar in La Candelaria. Regarding the possible cure, she maintains “the hope” that it will come sooner or later or “at least something that will slow down the speed at which the disease progresses.”
Measures.
Pérez highlights the need to create ALS Units in hospitals to coordinate the multidisciplinary care that is provided to patients who suffer from it. This means coordinating neurologists, pulmonologists, nutritionists, rehabilitators, speech therapy, occupational therapy, physiotherapy, alternative communication system, psychology, primary care and palliative care.
The difficulty in diagnosis and the rapid evolution of this disease complicate the future of ALS patients, who need comprehensive multidisciplinary care 24 hours a day.
On the occasion of the commemoration of the World Day for the Fight against ALS, the Cabildo de Tenerife lit up the façade of the Insular Palace last night in green, thus joining the Light for ALS campaign (#LuzPorLaELA).
“Something heartbreaking” to live with
“It’s kind of heartbreaking.” This is how Marcelino Martín, president of TeidELA, defines the arrival of the disease in a family. The diagnosis affected his sister Cati in October 2020 and he took over. The name of a group officially born in October 2021 comes from the challenge that they named, and carried out on the Island, by two affected people from the Peninsula, Mikel and Jaime. Marcelino recalls that “80% of the funding for research comes from private initiative or from what is collected in acts of solidarity.” He mentions the effort of Juan Carlos Unzue, affected and exporter, among others from CD Tenerife and FC Barcelona, who has organized a match for this purpose on August 24 between the Barça team and Manchester City. He explains Martín that “everything changes around the patient; health, care, social and, above all, psychological »He values that 90% of the disease is random and only 10% genetic. He underlines the profiles: between 50 and 60 years old, and more men (58%) than women (42%). When Rogerio, an athlete with ALS, is reminded, he thanks his family for “the donation of the eye reader to communicate.” Personalities from the sports, cultural and journalistic fields selflessly join the campaign.
