• First Service Center for ALS patients in Spain held in Madrid today an open day.
• Madrid, the five ALS units in public hospitals, the head of the autonomous communities to offer health care to the sick.
• While small steps have been made in basic research today, patients can only resort to palliative treatments.
Madrid has five ALS units in public hospitals
Carlos III, La Paz, Gregorio Marañón, October 12 Clínico San Carlos, and from those offering patients multidisciplinary treatment of amyotrophic lateral sclerosis (ALS) needs. The ELA, which in our country affects 3.5 persons per 100,000 inhabitants, is today one of the most cruel that exists because of the disability it causes, the lack of cure and short life expectancy for patients between 2 and 5 years.
Madrid is a pioneer in the development of ALS units in the hospitals of the Community (established 2006) and is leading in terms of services. Today, the first Center for Patient Services ALS Spain opens its doors in a public day with the families and patients who want to appeal to government and society on the need for improved care and other necessities for sick of our country.
ELA Units allow different hospital specialists, neurologist, lung, digestólogo, therapist, physiotherapist, psychologist and social worker ill-treat the entire complexity of the disease, whose progression is especially marked by respiratory and digestive complications. But very few Autonomous Communities that have such units, so the associations are calling for an ALS response even to avoid discrimination between patients on a purely geographical.
Amyotrophic lateral sclerosis (ALS) is still a great unknown in clinical neurological no. Its early symptoms are easily confused with other more common illnesses, which makes its early diagnosis and treatment are delayed in most cases. Today there is no cure, and patients with ALS have only one prescription drug that modestly increases their life expectancy. Basic research and therapy of the disease progresses very slowly, so now ill with ALS can only resort to palliative treatment and symptom control.
ALS progression is variable and depends heavily on how each person is served or care the patient. The median patient survival does not exceed 3-4 years after their diagnosis, so that loss of mobility and symptoms are occurring at great speed. There are cases of less than one year of evolution and some more than ten years of evolution just as the scientist Stephen Hawking.
Since the Spanish Association of amyotrophic lateral sclerosis (ADELA) work to improve the quality of life of patients and families by offering those services today and the Public Health System and the recent law on guaranteeing Unit. Among the latest initiatives of national and regional associations ADELA include the "Guide for the Care of ALS in Spain" the first official document on the disease and their requirements backed by a large group of experts. The distribution of this guide in clinics, hospitals and health centers across the country is one of the recent commitments made by the Ministry of Health in the fight against this cruel disease.
While clinical research does not provide solutions - and very little is known about the disease and its evolution, palliative treatment and symptom control is the only option for those suffering from ALS. This explains the need to increase the ELA units in our hospitals, and improving as far as possible the social and medical assistance to patients and families, regardless of where they reside.
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