What is ALS, Juan Carlos Unzué’s disease

Juan Carlos Unzue has been the protagonist of Lo de Évole this Sunday. The ex-footballer, diagnosed with ALS in 2019and his partner, María Elorza, have opened up on the program about what is it like to live with this disease. The exporter has also shared with Jordi Évole how he has learned to enjoy the present or his considerations about the euthanasia.

What is ALS

ALS -acronym for Amyotrophic Lateral Sclerosis– is a degenerative disease that affects motor neurons, those responsible for transmitting nerve impulses to the muscles. As a consequence, patients suffer a muscular weakness that progresses and causes trouble talking, walking, breathing, or eating.

According to the Luzon Foundation -founded by banker Francisco Luzonwho died in 2021 from this disease-, ALS progresses gradually causing muscle atrophy and paralysis in almost every muscle in the body, but usually does not usually cause damage to cognitive ability.

In the same way, as stated by the Spanish ALS Association (adELA), the patients keep their senses and eye muscles intact. According to this association, this disease was first described by Dr. Jean Martin Charcotwhich gives its name to the disease in France.

Its name in Spanish, includes the same non-profit entity, explains its main characteristics: ‘lateral‘, because it alludes to the loss of nerve fibers accompanied by sclerosis (pathological hardening) in the lateral area of ​​the spinal cord, and ‘amyotrophic‘, in reference to the muscular atrophy that it produces.

Some 700 people develop ALS each year in Spain

ALS is a chronic, lethal disease and, according to the Spanish Society of Neurology (SEN)the most frequent neuromuscular disease: each year about 700 people begin to develop its symptomsaccording to data from this medical society, which places its maximum incidence between 60 and 70 years of age, although there are people who develop it in the second or third decade of their lives and even –although there are few cases– in the childhood.

As a consequence of the deterioration and gradual loss of motor neurons, patients experience a severe muscle involvement that causes paralysis progressively, until complete paralysis. The main cause of death in affected people is precisely respiratory failure due to the involvement of the respiratory muscles.

Still today the causes are unknown of ALS, although according to the SEN a small percentage has a family origin (between 5 and 10%) and there are certain risk factors.

A high mortality

According to SEN data, half of people with ALS die in less than three years from the beginning of the disease, 80% in less than five years and the majority (95%), in less than a decade. Due to this high mortality, and although it is the third most common neurodegenerative disease In our country, after Alzheimer’s and Parkinson’s, only between 3,000 and 4,000 people in Spain suffer from it.

In the United States, ALS is known as ALS disease. Lou Gehrig by the famous baseball player who retired due to this disease in 1939, although perhaps the best known case in the world is that of the theoretical physicist Stephen Hawkingwho lived with the disease for more than half a century, from the 1960s to its death in 2018.

Unzue’s testimony

Despite the severity of this illness, Unzué concluded the interview with Jordi Évole on a note of some optimism and a message for those who care about him: “In this illness the best I can ask is that the progression continue to be slow“, has indicated. “If you see me active, it is the best sign that I am still well within the difficulties and the limitations that ALS generates for me”, he added.

You can see the final fragment of their conversation in the video that illustrates these lines, in which the former soccer player also states that after his death he would like to donate his body and that his departure “does not cause sadness.”