Dr. Sarah Vargas Santana: "There is a lack of units and centers for ALS patients and caregivers".
Amyotrophic Lateral Sclerosis (ALS) is known as “Lou Gehrig’s Disease” after the famous baseball player who was affected by this disorder.
Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease of the nervous system that attacks nerve cells (neurons) in the brain and spinal cord. “These neurons transmit messages from the brain and spinal cord to the voluntary muscles, which causes muscle weakness, disability,” explains Dr. Sarah Vargas Santana, neurologist-internist, with high specialty in Multiple Sclerosis, neuroimmunology and Demyelinating Diseases at the Hospital Metropolitano de Santiago (HOMS), was approached by Diario Libre on the occasion of the World Day of this condition.
- What causes ALS?
The origin of the disease is assumed to be multifactorial (genetic and environmental), but there is currently no known etiology in most cases. Generally, its onset is sporadic, although in 5-10% it occurs in a familial form, and several genes have been discovered that are a direct or predisposing cause of familial and even some sporadic forms.
- Life expectancy?
It is an incurable disease, with an average survival of three to five years.
- What are the first symptoms of ALS?
It often begins in the hands, feet or extremities and then spreads to other parts of the body. As the disease progresses and neurons are destroyed, the muscles weaken. Over time, this affects chewing, swallowing, speaking and breathing. Signs and symptoms vary greatly from person to person, depending on which neurons are affected. It usually begins with muscle weakness that spreads and worsens over time. These are some of the possible signs and symptoms: difficulty walking or performing normal daily activities; stumbling and falling; weakness in the legs, feet or ankles; weakness or clumsiness in the hands; slurred speech or trouble swallowing; muscle cramps and spasms in the arms, shoulders and tongue; inappropriate crying, laughing or yawning; and cognitive and behavioral changes.
- What does the treatment consist of?
Although we do not currently have a curative treatment, we do have pharmacological treatments that slow the progression of the disease and delay progression and thus prevent complications secondary to the progression of the disease. In the Dominican Republic we have an oral treatment, such as Riluzole, in addition to symptomatic treatment, which could prolong survival and improve quality of life.
Although we have trained personnel, I believe that we still lack units and support centers for both the patient and the caregiver. Multidisciplinary units should be composed of neurologists, specialized nurses, pulmonologists, rehabilitation physicians, nutritionists, palliative care teams, physiotherapists, speech therapists, speech therapists, occupational therapists, psychologists and social workers. Unfortunately, not all patients are able to access such services and even medications.
- What are the risk factors?
- Inheritance. Between 5 and 10% of people with ALS have inherited it (familial ALS). Most children of people with ALS have a 50% chance of developing the disease.
- Age. The risk of ALS increases with age, and is most common in the 40s to mid-60s.
- Sex. It is more common in men than in women. This sex difference disappears after the age of 70 years.
- Genetics. Some studies examining the entire human genome found many similarities between familial and sporadic ALS.
Link Diario Libre:
What is Amyotrophic Lateral Sclerosis and how it is treated – Diario Libre
Doctor: Dra. Sarah Vargas Santana