Amyotrophic Lateral Sclerosis (ALS) Global Day
Annually the International ALS/MND Associations celebrates 21 June as the global day of recognition of ALS/MND, a disease that affects people in every country of the world.
ALS/MND is a global problem. It doesn’t discriminate on the basis of ethnicity or region, there are patients all over the world. For every patients, the impact of the disease will be forever felt by their loved ones.
Associations Members across the world use the hashtag #ALSMNDWithoutBorders on 21 June to raise awareness and funds on Global Day.
What is ALS/MND?
Motor Neuron Disease (MND) is a group of diseases, in which the neurons that control muscles undergo degeneration and get die. Amyotrophic Lateral Sclerosis (ALS), Progressive Muscular Atrophy (PMA), Progressive Bulbar Palsy (PBP) and Primary Lateral Sclerosis (PLS) are all kinds of motor neuron disease.
These diseases are often referred to in the United States as Lou Gehrig’s disease, after the famous baseball player who died of the disease.
By any name, ALS/MND is characterized by progressive degeneration of the motor nerve cells in the brain and spinal cord. The neurons that control muscles and enable us to move around, speak, breathe, and swallow. With no nerves to activate them, muscles gradually weaken and waste. Symptoms including, muscle weakness and paralysis, as well as impaired speaking, swallowing, and breathing. Progress is generally rapid, with an average life expectancy of between 2 and 5 years from the onset of symptoms.
Although it can affect anyone, it is more affected people between the ages of 40 to 70.
The incidence of amyotrophic lateral sclerosis is 2 per 100,000 of total population, while the prevalence is about 6 per 100,000 of total population. Recent studies has found that the incidence is higher in people aged over 50 years.
Though it is classified as a rare disease based on its prevalence, ALS/MND in fact quite common. There are approximately 140,000 new cases diagnosed worldwide each year. That is 384 new cases every day!
The disease affects each patients differently and can have a devastating impact on their family, caregivers, and friends. The rapidly progressive nature of the disease requires constant adaptation to increasing and changing levels of disability, which in turn require increased levels of support.
Riluzole is one of the only two FDA approved medicines for the treatment of amyotrophic lateral sclerosis, which has been shown to prolong survival and slow the progression of the disease, and is available in the Product List of Parsian Pharmaceutical Co.