Advocate Dev Chaudhary’s first encounter with the Amyotrophic Lateral Sclerosis, or ALS as it is popularly known, was in 2008 when his grandfather, Chaudhary Vinay Kumar was diagnosed with the disease.
ALS is a motor neuron disease that leads to the degeneration of motor functions including swallowing, and even breathing.
About three years later, Mr. Kumar died of ALS. During these three years, Mr. Chaudhary and his family realized the lack of awareness on the disease in the country.
It was then that he created the ALS India Facebook page for people who wanted resources on the disease.
Years after his grandfather’s death, ALS has become a topic of conversation as celebrities from around the world are participating in the Ice Bucket Challenge, by dumping a bucket of ice water on their heads and/or donating money for ALS research.
“Earlier, there was little awareness about ALS in India apart from a couple of news articles. Now, the scenario has changed. Our page has been getting messages, mails, requests for information on ALS, queries on how to donate, where to donate, how to do the challenge etc,” he says.
Experts however say there is a long way to go.
Neurologist D.S. Halprashanth says that in India, around two cases are detected per one lakh population every year and around 6 people per one lakh population have the disease.
As of now, there is no treatment for the disease and even the causes are uncertain, he says.
