Brilliant researcher Rahul Desikan finds himself battling the same disease he has spent his life studying
A brilliant man who has spent much of his life researching degenerative brain diseases now finds himself in the grip of one such disease himself.
Two years ago, Indian American scientist Rahul Desikan had just started the biggest ever study of the genetics of amyotrophic lateral sclerosis (ALS). ALS is the same disease that affected Professor Stephen Hawking and Lou Gehrig.
Soon Desikan found that his voice had started changing and he had small muscle twitches in his left arm and weakness in his fingers. He was diagnosed with ALS five months later.
Desikan was a rising star in the University of California at San Francisco until he was diagnosed. Today he spends most of his time working from a wheelchair in his home. He is unable to walk, talk or hold his two sons. He can move his thumb and turn his head a bit and nothing else.
But Desikan has refused to let this dim his passion for work. He has written 25 papers in major academic journals on topics such as schizophrenia, Alzheimer's disease and Parkinson's disease. He and his team of researchers also discovered two genes newly linked to ALS.
Desikan has tried drugs, acupuncture and massage. He has also tried alternative treatments in India and energy healing in Dubai. However, nothing has worked. Desikan says his research gives him a reason to live.
ALS destroys the nerve cells that control voluntary muscle movement. The disease is diagnosed in about 6,000 people in the United States every year. Most die within five years, usually of respiratory failure. The majority of cases, including Desikan's, are not inherited. But genetic variations may make some people more susceptible to the disease.