In the Canary Islands, around 30 ALS patients are diagnosed each year

Former soccer player Juan Carlos Unzué, affected by ALS, and Guardiola, yesterday at the presentation of a charity match. / EFE

The main hospitals on the islands treat pathology with multidisciplinary units. There are 200 patients in the archipelago

About
200 people currently suffer from amyotrophic lateral sclerosis (ALS) in the Canary Islandswhere about 30 new cases of this disease are diagnosed each year, according to data provided by the Spanish Society of Neurology (SEN).

This Tuesday is the
World ALS Daya lethal neurodegenerative pathology characterized by the progressive loss of motor neurons in the spinal cord and cerebral cortex that causes progressive paralysis of the body.

Most people diagnosed with ALS die between 3 and 5 years from the onset of symptoms. The approach to the disease is complex since «
causes a very hard situation in the patient and his family», explains Marcela Henao, from the Multidisciplinary Unit for ALS Patient Care at La Candelaria Hospital, in Tenerife, who points out that both the affected person and their relatives require psychological care to cope with the diagnosis and the disease.

Neurodegenerative pathology –the third most common in Spain after Alzheimer's and Parkinson's– is declared at any age, but it is more frequent that it appears between 40 and 60 years of age. "There are patients of all ages, although it is increasing in the elderly population," says Henao, who recognizes that the objective of the different specialists who work in the
multidisciplinary unit –neurology, endocrinology, nutrition, pulmonology, nursing, psychology, social work, rehabilitation and palliative care– is to maintain the patient's quality of life for as long as possible. A difficult task as the muscles lose their movement, including those involved in speech, chewing and breathing.

Third-level hospitals in the Canary Islands have multidisciplinary care teams for ALS patients. In addition, the Government of the Canary Islands and the Luzón Foundation have a framework collaboration agreement to help patients, their families and caregivers, as well as to promote the study of this disease.

Claims

Coinciding with World ALS Day, the Luzon Foundation, together with the National Confederation of ALS Entities (ConELA), demand parliamentarians to promote a
law of this disease with a state character capable of attending to the 4,000 affected in Spain and their families.

For its part, from the Spanish Society of Neurology (SEN), they emphasize the need to dedicate resources to the development and implementation of treatments aimed at the prevention and control of the disability caused by this disease, as well as to create specialized units to care for patients and who are capable of promoting research into this disease.

Likewise, they recall that the high level of disability of ALS generates a cost of
50,000 euros per year per patient.

Those affected denounce that there are no caregivers or specialized residences

CDA

the Gran Canarian palms. The greatest burden of caring for ALS patients falls on their immediate environment. “It is a home disease. No specific systems have been implemented to help the sick either on the islands or in the rest of the State," says the president of the Spanish ALS Association (AdELA), Adriana Guevara, who maintains that families are in charge of attending patients during most of the crisis. "There are no residences or specialized caregivers," Guevara denounces, insisting that an ALS patient needs constant care and support.

Also the slowness in recognizing the dependency situation works against a disease that progresses rapidly. Thus, the wait for the recognition of the dependency situation takes about two years in the Canary Islands and half of ALS patients die within three years of diagnosis.

In this sense, Guevara affirms that the associations of those affected are the ones that are providing support to the families of the sick and that public health has not yet created mechanisms to relieve them.

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