Dr Rahul Desikan  (Craiginlimbo/Wikimedia Commons)
Snapshot
  • Dr Rahul Desikan immersed himself in research on diseases like the ALS. Then he was diagnosed with it.

Rahul Desikan, an Indian-born US neuro-scientist died on 14 July at the age of 41. He was suffering from amyotrophic lateral sclerosis (ALS).

It was in February of 2017, when Desikan was diagnosed with ALS. In the Washington Post, Desikan wrote an article on his condition and his research that studies the very condition he was slowly moving into.

The article will forever stand as a testimony to the might of human spirit against the adversity with which nature challenges us consistently.

Desikan’s approach to fight neuro-degenerative diseases is called 'polygenic analysis' which he describes as a judicial mixture of 'genetics, high-end statistics, and advanced computer models, with a twist of epidemiology' that will give individualised predictions for genetic predisposition towards certain diseases at a later part of life.

As a student of neuroscience at Boston University, he, along with his colleagues developed the famous 'Desikan atlas' which he considered as his 'most proud' achievement. As he told Lancelet Neurology, he poured himself ‘into making it, day and night, for two years'.

The atlas Desikan developed is an automated system that identifies 34 regions of both the hemispheres of the brain cortex, using data from MRI scans.

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It was in Boston itself that Desikan met his wife, Maya Vijayaraghavan, who was then in her fourth year at medical school. When they found out that they shared the common family deity - Uppiliappan, Desikan knew they would be married.

With two sons and a happy life, Desikan was immersing himself into the research of neuro-degenerative diseases.

It was then that it happened. In the words of Dr Desikan himself:

Seemingly by chance — but maybe by some higher power — I was working on the foundations of a polygenic score for ALS when I noticed one of my arms becoming weaker. Then my voice changed and swallowing became hard and, well, a fatal diagnosis emerged. I ran a polygenic analysis on my own DNA and learned that I carry several common ALS genes that also involve the immune system.

Undeterred, Desikan still worked. And how.

And as miraculous as my life is — in so many ways — I welcome death. On Feb. 17, 2017, I received a diagnosis of amyotrophic lateral sclerosis, known as ALS or Lou Gehrig’s disease. Six months later, I was confined in a wheelchair. One year later, I was locked-in. One-and-a-half years after my diagnosis, I was started on a noninvasive ventilator. For now, from my new perch, I am certain that dying is easier than this living.

Today personalised polygenic scores are becoming slowly but increasingly mainstream. Like star charts but scientific, these help people to understand what kind of degenerative diseases they are susceptible to, as age progresses.

As Dr Desikan said, 'from Alzheimer’s and heart disease to schizophrenia and lung cancer', they can tell your genetic predisposition but they are not diagnostic results but a possibility chart of the direction your health can take. Based on them, one can take preventive steps including changes in food habits, exercises and being cautious with regard to certain factors etc.

Even as his disease progressed and confined him to the wheel chair, he declared:

So I don’t stop. I can’t stop. I spend my days conducting research on, thinking about, living and breathing all things ALS.

So apart from going through the genetic and biomedical data of more than four million people cutting across countries with 70 different diseases, including ALS, he now added his own genetic profile to that data set.

According to Desikan, no two patients with ALS can be considered the same. Each person with ALS 'has a unique genetic fingerprint that may provide insights into treatments that may be most effective.'

A colleague recently asked why I still spend my time doing ALS research. Why not watch movies and take it easy with the time I have left? This is what I said: I would stop doing research if my colleagues in the field could find treatments that slowed down my progression instead of just offering ways to keep my body alive. I would turn my attention to other nonscience pleasures if ALS researchers and clinicians would stop using a “one size fits all” treatment framework and embrace a personalized approach because no two ALS patients are alike.

This gentle scientist, and a loving husband has become immortal.

In the Sri Vaishnavaite tradition, death is called ‘attaining the auspicious feet of Acharyan’ which may well be true for the life of Dr Rahul Desikan.

May the spirit of Dadhichi that he showed in the face of such an immense adversity guide the global science community to realise his vision for the welfare of our species.

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