21 June: World ALS Awareness Day
World ALS Day was launched in 1997 by ALS patient associations from all over the world to raise awareness of the disease and to join forces to demand more and better research aimed at both identifying causes and improving treatments.
Specifically, the origin of the date is to be found in the 6th Meeting of the International Alliance of ALS Associations held in 1996 in the American city of Chicago.
Why 21 June? As the International Alliance of ALS Associations explains, because this date ‘is a solstice – a turning point – and each year the ALS/MND community undertakes a series of activities to express its hope that this day will be another turning point in the search for a cause, treatment and cure’.
We are talking about a disease that affects approximately 2 to 5 people out of every 100,000, with a special affectation between 40 and 70 years of age, being slightly more common in men than in women.
What is ALS?
Amyotrophic Lateral Sclerosis is defined as a disease of the central nervous system, characterised by progressive degeneration of motor neurons in the cerebral cortex, brainstem and spinal cord.
The consequence is muscle weakness that can progress to paralysis and can spread from one body region to another, threatening motor autonomy, oral communication, swallowing or breathing.
However, the senses, eye muscles and intellect remain intact in patients who increasingly need help in their daily activities.
The disease was first described in 1869 by Jean Martin Charcot, a French physician. For this reason, ALS is sometimes also known as Charcot syndrome.
As a curiosity, ALS is also known as Lou Gehrig’s disease due to the enormous social impact in the United States when the then baseball star of the New York Yankees suffered from it when it was a virtually unknown condition.
Variants of Amyotrophic Lateral Sclerosis
Depending on the possible origin, there are two types of variants of this chronic, disabling neurological disease:
- Familial ALS. Between 5 and 10% of diagnosed cases suffer from this hereditary variant with an autosomal dominant profile.
- Sporadic ALS. With more than 90%, this is the most common variant and its onset is random, with no associated risk factors (environmental, geographical, occupational or dietary) being identified.
Symptoms of ALS
Amyotrophic Lateral Sclerosis usually starts in the hands, feet, arms or legs and spreads to other parts of the body with a series of symptoms, such as difficulty walking, weakness or clumsiness in the hands, problems with speech or swallowing, crying, laughing or yawning untimely or weakness in the legs, feet or ankles.
Juan Carlos Unzué: ALS and overcoming it every day
The diagnosis of ALS in 2020 of Juan Carlos Unzué, ex-player and ex-coach of the first division of football, changed his life and turned him into an example of overcoming every day.
His children, in fact, define him in Mejor Conectados as a reference in his daily struggle, in his example of overcoming and in the work of raising awareness of ALS.
Unzué announced his retirement as a coach and started a new stage as an activist whose media profile serves as a loudspeaker for the disease.
If you want to know more about Juan Carlos Unzué and how he lives with ALS, don’t miss this video of our Better Connected initiative (Spanish):
