Foundations’ purpose is to develop all kinds of help for patients with ALS and other neuromuscular diseases in Russia. We help patients, their family and carers. We also do everything to increase ALS awareness in society.
What is ALS?
Amyotrophic lateral sclerosis (ALS) is a progressive disease, characterized by motoneuron impairment in a brain and spinal cord. These cells control muscles and their death leads to progressing weakness and muscle wasting which eventually developing paralysis; affected upper and lower limbs lose their functionality, swallowing, breathing and speech become increasingly difficult to perform, person lose the ability to communicate with others.
There are several ways of disease progression: upper or lower limbs weakening, and sometimes a persons’ ability to speak is affected with the sensation of full month. This is called a debut and it depends from ALS form. ALS develops very fast – the time gap between diagnosis and complete loss of independence it is always around several months.
There are still a lot of scientific questions remain unanswered, including the reasons why neurons die in adults.
What do we know for sure:
- The disease is not infectious and, therefore, it is not contagious.
- ALS can develop in any adult person, but in most cases the diagnosis is made in the age of 40 and more, and mostly disease manifests itself between the age of 50 and 70 years.
- Men are affected more often, than women.
- Incidence of ALS is 2 cases in 100 000 people a year.
- Prevalence of ALS is approximately 5-7 people in 100 000 people.
One of the most common questions amongst people with ALS – “Why do I develop the disease? Is it about my way of life, or my activities, or is it congenital?” Unfortunately, this question is the most complicated of all and we still don’t have any clear answer.
Currently, all over the world there are being carried out a studies of specific intracellular impairment mechanisms which lead to motoneurons death and all surrounding cells. There are several theories and a group of scientists all over the world are working together to prove or rule them out.