Fateh Veer Singh Guram, The Hush Post: In 1963, a young boy aged just 22 years old was told that he only had another 2-3 years to live. The doctors told him that he had a disease called Amyotrophic Lateral Sclerosis, and there was no cure available.
Contrary to what everyone had imagined, that boy lived with the disease for another 54 years, and his contributions in the field of cosmology are unparalleled. Despite being bound to a wheelchair for the rest of his life and depending on others for tasks such as bathing and eating, he was living testimony to the age old saying “Mind over body.” That boy was Stephen Hawking.
Stephen Hawking died on March 14, 2018 at the age of 76. He was affected by ALS for more than 50 years of his life, and that brings us to the question: What is ALS?
Amyotrophic lateral sclerosis (ALS) is a progressive, neurodegenerative disease. What this means, is that a person who is diagnosed with this disease loses the ability to control muscles which help us to walk, eat, speak and ultimately, breathe. This disease affects the nerves of the spinal cord and the brain, and both these body parts are required to make the muscles of the upper and lower body work.
While most patients die within 3-5 years, only about 10 per cent of the patients live for 10 years or more. This is why Stephen Hawking’s longevity while suffering from the disease is something that has baffled scientists across the world.
Slightly more common in men than women, there is no cure for this rare disease, which sees 2 people out of 1 lakh getting affected every year. The average age in which this disease is diagnosed is between 55-65 years. Strangely, military personnel have a higher chance of falling prey to the disease, as compared to other people.
Affecting nearly 1.5 lakh people in India, the disease is of two types- familial and sporadic. Familial ALS, as the name suggests, is inherited, with children of people suffering from the disease having as high as a 50 per cent chance of inheriting the disease. Sporadic ALS accounts for nearly 90 per cent of cases, and the cause in such cases is completely unknown.
The disease gained widespread popularity and became a household name in 2014, via the Ice Bucket Challenge. Pete Frates, a former Baseball player at Boston College is credited with starting the challenge, which aimed to raise awareness about ALS and generating funds for research. The ALS Association was able to generate nearly 128 million dollars through the challenge. However, finding the causes and cure for the disease remain a major challenge, as scientists have no idea how one falls prey to the disease.
Till last year, there was only one US-FDA approved drug for ALS, and even that could only extend the lifespan of a patient by a few months.
ALS is also commonly called ‘Lou Gehrig’s disease’, in honour of the baseball legend who died from the illness in the year 1941.
Thus, while a cure for ALS seems to be some time away, we can take inspiration from Hawking himself, who said “I have been lucky that my condition has progressed more slowly than is often the case. But it shows that one need not lose hope.”