O que é ELA?
Amyotrophic lateral sclerosis (ALS) is a neuro-degenerative disease that progressively affects the two groups of motor neurons responsible for voluntary muscle control, resulting in muscle weakness and atrophy. It slowly compromises all independence and autonomy, loss of oral communication, swallowing and even the person’s ability to breathe. British physicist Stephen Hawking who died in 2018, was one of the world’s best known carriers of ALS.
It is estimated that there are between 450,000 and 600,000 people living with ALS in the world today, but it’s likely that this number is much higher due to the fact that it is a difficult and time-consuming diagnosis and often patients die before they receive a diagnosis.
ALS does not discriminate based on gender, age or social status. To this date, the exact causes of the disease are not known and the majority of people have no idea that the disease exists or that anyone can come down with it.
ATROPHY OF LIMBS
difficulty to use hands, arms & legs
MUSCLE WEAKNESS IN THROAT
difficulty swallowing, breathing & vocalizing
INABILITY TO MOVE
Loss of use in arms and legs
twitching & cramps in hands & feet
Much of the public may have heard about ALS but don’t realize that practically anyone can be afflicted. Women and men of any age, even children are becoming impacted. Officially, every 90 minutes, the average duration of a movie, a person is diagnosed with ALS and in the same time span, someone dies from the disease. The true numbers are unknown and likely much higher since many people die before having the diagnosis. It can take years of suffering symptoms to finally get the diagnosis that “you have ALS”.
In general, misdiagnoses are already considered the leading medical error, but when it comes to ALS, this error is often compounded so that a person with ALS (pALS) may have been misdiagnosed multiple times, often with pharmaceutical and even surgical interventions that were unnecessary or even detrimental to the pALS. Once the diagnosis is “conclusive” the medical establishment provides a sober assessment of how much time the pALS have left then sends them home to settle their affairs. At this juncture, the patient is invited to return every 3 months for a ‘follow up’ to determine how much time they have remaining. Sadly, very little guidance or education is provided leaving the pALS and their family feeling unsupported and lost. The result being the pALS and their loved ones left feeling discarded and having to learn things ‘the hard way’ which ultimately depletes emotional, mental and physical resources.
Did you know?
The projected lifespan of a diagnosed patient is between 2 and 5 years. In the U.S
The annual cost of caring for an ALS patient can exceed $200,000 a year, above what the average insurance pays.
The diagnosis of ALS within a family is devastating to all. The first onset of symptoms may not be devastating, just frustrating trying to find out what’s wrong. But then the time spent going to a primary doctor, then from one specialist after the other, undergoing testing and more testing and then, when finally diagnosed being told that there is no hope of survival.
During this entire process the person with ALS and their family are experiencing the progression of physical deterioration (sometimes for years), and with that, the continuously increasing care required for the pALS.
Stress is the worst thing for anyone battling any disease, and with ALS it has been shown to contribute to the acceleration and progression of the disease. The levels of stress for both the patient and their immediate family nucleus are unimaginable.