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May 30 – World Multiple Sclerosis Day

Briefing flyer with the title “I connect, we connect” Interview with Johana Bauer by Lelio Sánchez”. There is also a photo of Johana Bauer smiling, director of Esclerosis Múltiple Argentina, the heading states: “May 30 World Multiple Sclerosis Day”

Under the slogan “I connect, we connect”, we celebrate the Day of Multiple Sclerosis, a disease affecting  2.8 million people in the world, around 17 thousand in Argentina, mostly young adults and women.

In 2009, the Multiple Sclerosis International Federation launched the first World Multiple Sclerosis Day bringing the international community together to share experiences and alternatives to counteract this disease.

Fundación Comparlante discussed with Johana Bauer, BA in Psychology and Executive Director of the Esclerosis Múltiple Argentina (EMA for its Spanish acronym), to learn about the work carried out by this institution.

 

What is Multiple Sclerosis?

Multiple sclerosis (MS) is a chronic neurological disease affecting the central nervous system which manifests mostly between 20 and 40 years of age. This is the most common cause of non-traumatic disability within this age range. So far, it has no cure, but there are medications and different treatments to control it and to improve the life quality of people with this disease.

What are the symptoms of Multiple Sclerosis?

Some of the symptoms are muscle stiffness,  vision problems, tingling feeling, itching or numbness, problems with memory and thinking, problems with balance and coordination, fatigue. Many of these symptoms are invisible, which creates several social difficulties and at work to those who live with this diagnosis.

What is EMA?

EMA, Esclerosis Múltiple Argentina, is a non-profit association created in December 1986. In its early stages, its main objective was focused on disseminating the disease almost unknown in Argentina. At the same time, the first support group for people with Multiple Sclerosis was being organized. To do this, information on experiences gathered in International associations was critical.

EMA works on improving the life quality of people with this diagnosis and their relatives. “Every May 30 is an opportunity to share with all the society and to make visible the situation of this particular pathology by strengthening our links and to be able to get a better situation for everybody in such a way”, pointed out Bauer.

How is the association formed?

In EMA, we are organized in different areas aiming at checking and advising patients with Multiple Sclerosis. There are mental health, legal and social areas. We provide free mentoring and comprehensive advisory.

Which activities have you planned to celebrate World Multiple Sclerosis Day?

This Monday, from 19:00h time in Argentina,  a virtual meeting will be livestreamed on the Multiple Sclerosis Association Argentina (EMA) YouTube channel. This meeting will gather diverse healthcare professionals from all the country  to address varied topics such as how Multiple Sclerosis is, its symptoms and diagnosis; rehabilitation and life quality; advances on the treatment and the patients´ rights.

In collaboration with other associations, different emblematic buildings in Argentina will light up with orange light today and for this month to raise awareness of this rare disease.

It is critical to get to know information on Multiple Sclerosis, since it is considered a rare disease which is not neither inherited nor contagious, it has no cure, but a treatment. Patients with this pathology can live a full life by providing them the needed support.

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