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June 21 – Global Amyotrophic Lateral Sclerosis Awareness Day

Flyer with the title “Let´s talk about ALS, by Lelio Sánchez”. As heading the text “June 21, Global Amyotrophic Lateral Sclerosis Awareness Day”. Beside the title, there is a wheelchair user with Amyotrophic Lateral Sclerosis

Let’s talk about ALS

 

At Fundación Comparlante, we look for raising awareness on ALS, Amyotrophic Lateral Sclerosis. ALS is a condition that may cause difficulty walking, speech problems, difficulty swallowing and breathing. However, not everybody necessarily shows symptoms, and it is less likely that they all develop at the same time or in a specific order. Whereas currently there is no cure for ALS, symptoms may be treated to improve the life quality of people with this condition.

There are different types of Amyotrophic Lateral Sclerosis, i.e., Progressive Bulbar Palsy (PBP), Progressive Muscular Atrophy (PMA), and Primary Lateral Sclerosis (PLS).

Around the world, ALS affects 5 out of every 100.000 people generally in the age range between 50 and 70 years old. This disease normally affects more men than women in a ratio of 2 to 1.

 

How does a person with ALS live?

It is worth mentioning that patients may improve their life quality with physical therapy, rehabilitation, and the use of braces.

People with ALS tend to experience fear about the future, disbelief of the diagnosis, anger towards the healthcare profession, isolation for feeling different from the others, among others. Emotional support and psychological and/or psychiatric treatment for both the patient and his/her relatives is essential to face the disease.

Data in Argentina

In Argentina, approximately 560 people are diagnosed with ALS every year. It is estimated that around 3.000 Argentinians might have this disease at any time in their lives.

In May this year, Ricardo Guerra, Senator for La Rioja Province, presented a Law Project for Self-Protection and Power of Prevention aimed at providing people the possibility to make decisions in advance on their health and heritage in case of a potential decrease or loss of their ability either provisionally or permanently.

Moreover, the initiative considers the power of prevention, in which the person, whether he/she becomes vulnerable, may assign another trustworthy person to act on his/her behalf and to comply with the critical decisions of his/her life. Every decision shall be recorded before a notary.

In the Global Amyotrophic Lateral Sclerosis Awareness Day, Fundación Comparlante shares information aimed at preventing, taking care and supporting people living this condition with the community.

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