This June 21, 2021 is not only the first day of summer and the music festival. This date is also used to raise awareness of amyotrophic lateral sclerosis, also known as Charcot disease. The Association for Research on Amyotrophic Lateral Sclerosis, a disease that receives little media attention, has decided to publish the first edition of June Shards, a month to open our eyes to ALS this year. Explanations.
What is amyotrophic lateral sclerosis?
That Amyotrophic Lateral Sclerosis (ALS), also known as Charcot disease, is a serious neurodegenerative disease. It is defined by the progressive loss of motor neurons in the brain and spinal cord. This nerve degeneration leads to a loss of muscles that are used less and less. This affects both the muscles involved in voluntary movements (arms, legs etc.) than the muscles involved in reflex movements (swallowing, breathing, etc.). Patients die from loss of respiratory function.
ALS usually begins between the ages of 50 and 75. To date, there is no curative treatment. However, there are symptomatic treatments that include, in particular, physical therapy and the use of analgesics and muscle relaxants. The causes of ALS are still not clearly known. The origin of the disease would be multifactorial, mixing genetic and environmental factors. Scientists have found that Charcot disease runs in families in 10% of cases. In addition, suspected environmental factors include smoking, playing competitive sports, exposure to pesticides, heavy metals, and the cyanotoxin BMAA found in certain algae.
Amyotrophic lateral sclerosis in few figures
ALS is one of the most common rare diseases. More than 13,000 new cases are discovered in Europe every year. Every day in France, 4 people die from ALS and 5 see their lives changed because they are diagnosed. To date, the patient dies on average 3 years after diagnosis. However, in 10% of cases, patients can live longer than 10 years.
June Shards ALS Awareness Month
That Amyotrophic Lateral Sclerosis receives little media coverage despite being one of the most common rare diseases. That’s why the Association for Research on Amyotrophic Lateral Sclerosis (ARSLA) published the first edition of June Shards, a month to open our eyes to ALS. In fact, for the first time in June, events multiplied to raise awareness of Charcot’s disease. The goals of this campaign are:
- raising public awareness of disability;
- make ALS known to all;
- Raise funds for research against this disease.
A series of events took place in June. The highlight of this month is Tuesday, June 21st, International ALS Day. An appeal to policymakers and fundraising are expected to be sent out by June 30. They are used to support research into ALS, but also to support patients in their fight against the disease.
Alexia F., Doctor of Neuroscience