Indian Scientist Gets Diagnosed With ALS, Ironically The Disease He Was Researching On

In a strange twist of fate, an Indian scientist who research topic was Amyotrophic Lateral Sclerosis (ALS) ended up suffering from the same disease. Rahul Desikan, a scientist at the University of California, San Fransisco was diagnosed with the motor neuron condition one year ago while he was researching the devastating illness, which claimed lives of famous personalities like Stephen Hawking and Lou Gehrig. Today, he has been incapacitated by the illness and heavily relies on his caregivers for his day-to-day functions.

A researcher of degenerative diseases, Rahul was working with a singular mission to rid the world of ALS. Sometime after he had just begun the world’s biggest study on the genetic factors of the disease, Rahul noticed some startling changes in his body. Among the first signs was his changing voice. He noticed that the pitch had changed and his voice had an odd nasal quality. The muscles of his left arm and fingers started twitching, and five months later, he was diagnosed with ALS.

A brilliant scientist, Rahul came into the spotlight after he created a Brain Atlas with the help of researchers from Harvard. He moved to the University of California for a two-year fellowship in neuroradiology and also trained the residents at the institute.

Rahul had fears about ALS when he noticed muscle weakness and changing voice quality. But his fears were brushed off. Soon he started slurring words, and in February 2017, he was finally diagnosed with the illness. He tried everything from drugs, to acupuncture and massage, but nothing bore results.

Unable to speak or move at will, the 40-year old is mostly tethered to his wheelchair. But he can move his thumb, and he uses this ability to his advantage. The computer he uses is modified for his requirements. So he types using a cursor which he operates with his thumb. It’s an excruciatingly slow process, but he keeps at it with patience, typing his latest scientific paper one letter at a time.

Rahul is also a student of Greek tragedy, in which dramatic irony plays a central role in the story. It strange that he has come to find himself in one. In an interview to Washington Post, he types, “the universe is playing a cruel joke on us." He expresses his loss of faith in God; it’s incomprehensible that “a loving being would ever do something so cruel.”

He may sound despondent, but his actions say otherwise. Rahul hasn’t given up his fight against the disease. He has authored 25 papers in major academic journals on degenerative diseases like schizophrenia, Alzheimer’s disease and Parkinson’s disease.

His study has led to the discovery of two genes linked to ALS. His goal is to find ways to prevent and treat this dangerous disease by combining genetic data, MRI examination and patient’s symptoms. Unfortunately for Rahul, his own discoveries may not benefit him, even though it may help others afflicted by the condition.

His support system comprises his wife Maya and their two sons. Two full-time caregivers take care of his needs, while his parents and siblings visit him frequently.

He rues not being able to hold his four-year-old in his arms, but he has found his inner strength, even in the throes of his illness. He writes, “In some twisted way, ALS has made me free and realise what my life and who I am - a human being that has given and received love to his family and friends.”

(The above story first appeared on LatestLY on Jun 15, 2018 12:42 PM IST. For more news and updates on politics, world, sports, entertainment and lifestyle, log on to our website latestly.com).