ALS (amyotrophic lateral sclerosis), also known as MND (Motor Neurone Disease), is a degenerative motor neuron disease. ALS was first identified by a French neurosurgeon in 1869 and while significant advances in our understanding of ALS have been made over the last two hundred years, there is much about ALS that remains a mystery.
What we know is that about 5-10% of all ALS cases are heredity in that there’s a genetic component (familial) which leaves the remaining 90-95% of ALS cases to be the result of random occurrence (sporadic). What this simply means is that anyone, of any age, gender, economic status, religion, and ethnicity can get ALS.
While ALS most commonly strikes people between the ages of 40 and 70, children and the elderly have been diagnosed with this devastating disease. Military veterans with any history of service in the last century, particularly those who served in the Gulf War, have a 50-60% higher risk of being diagnosed with ALS than do civilians. Every day in the United States alone, there are 15 newly-diagnosed cases of ALS while during the same 24-hours 15 people will die from ALS.
While ALS presents itself differently in each person, common symptoms can include a weakness in the arms, hands, legs or feet that worsens over time. In some cases, muscle weakness can begin in the bulbar muscles connected to speaking, chewing and swallowing. People who experience ALS symptoms early on in their bulbar muscles usually report a change in voice quality and tone, and/or difficulty with chewing and swallowing food. Many people with ALS will eventually have a tube inserted in the abdomen to receive liquid nourishment.
As it runs it course, ALS will eventually affect muscles in the arms and hands, legs and feet, chest, abdomen, back, neck, throat and mouth, tongue, face, and diaphragm. Near the end of a person’s life with ALS it’s possible they will experience partial or even full paralysis of the body while their mind remains completely unaffected. Individuals who choose to have a tracheotomy and go on a ventilator are able to live longer with death eventually resulting from secondary causes such as infection, heart attack/failure, or blood clots. For those individuals who choose not to go on a ventilator, advanced weakness of the diaphragm will eventually make it impossible for the person to take in enough oxygen, leading to their death.
The average life expectancy from time of diagnosis to death is between 2-5 years with exceptions falling on both sides of that time frame. At this time there is no known cure for ALS and only one treatment which has been found to extend life measured in weeks or months in a small number of people.
To learn more about ALS and advances being done in the area of research and treatment, visit any of the ALS agencies provided on Choose Your Charity.