16 November,2025 09:27 AM IST | Mumbai | Debjani Paul
“What’s for lunch?” asks Sapna Rana with her trademark humour, as she communicates through a device that tracks her eye movements and translates it to speech. Pic/Amit Anshu
There's an entire generation that has grown up listening to Sapna Rana's voice on the radio. Remember the tagline "It's hot" that aired on the country's very first private radio station? If that unlocked a core memory for you, then you know exactly what we're talking about. RJ Sapna was once the voice that lakhs of Indians woke up with every morning. And then amyotrophic lateral sclerosis (ALS) took her voice.
"After my diagnosis in February 2021, when I heard the doctors say âyou have two to five years to live', I was waiting for the end," she tells us over a video call from her Bengaluru bedroom, which resembles a state-of-the art hospital suite.
She disappeared from her social circles, as well as social media, as the disease slowly took away the things she found joy in. First, walks with her two indie dogs, Aloo and Mishti, got harder and harder. Next, she lost one of her big loves: dance. Once known for her impromptu dance parties in the office, she'd make every new recruit get on a table and dance. But soon, she found her own body unwilling to obey her. She switched to a self-controlled wheelchair, but the disease switched gears too, and went for her upper body. Eventually, she lost control of her arms, and then her throat, unable to chew or swallow food, or speak.
"I was depressed; I didn't want to meet people. I isolated myself and shut out everyone around me," she recalls.
Not even ALS could silence Sapna forever, though. In recent weeks, she has exploded on the social media scene with viral videos - one of them has garnered 2.6 lakh likes in just a week - recording her battle against the disease. Her goal? To connect with other persons with ALS (PALS) and their caregivers (CALS) and give them hope, as well as generate public awareness about the medical condition. Rare as it is, half the comments are "what is ALS", and the other half is "nazar is real".
"Losing my voice hurt most of all," she tells us with the help of an eye-gaze device that has a camera to track her eye movements and translate them into text or speech. It's slow going; the system requires Sapna to focus on one symbol or letter at a time to stitch words together. The voice that emerges is clear but doesn't have Sapna's trademark vitality and magnetism.
But in these videos, Sapna has rediscovered her voice, one that comes from within. She talks about dogs - "I can't pet dogs any more, so now they pet me". She shares her bucket list for when a cure is found: "1) Get a job. (2) Dance. (3) Make shite tea for [companion and helper] Manisha who has been giving me bakwaas tea for four years. What are the chances that the tea kills me before the disease does?"
"There are so many things I wish I had known earlier, like voice banking. It's when you record your own voice to be able to use it later on an eye-gaze device," she says, "It's a devastating disease and moves really fast. So I feel a sense of urgency to share what I have learnt, like using a baby monitor to call for help. Or how important it is to not lose weight [which hastens muscle atrophy], or how to modify the toilet."
"Most of all, I know what it's like to be depressed with this diagnosis. It's easy to fall into a black hole when you know that there is no cure and you're going to get worse. So I want to share what I read, heard, was advised, prescribed to stay positive and hopeful. I'm keen to tell people how I made a margarita with the giant lemon life threw at me," says Sapna, who also shares resources on support groups, her therapy regimen, and other tips and tricks with the ALS community.
Ironically, after years of asking her family "Why are you keeping me alive?", it was during a brush with death that Sapna found her will to live again. "In March this year, she had a cold that turned into pneumonia," recalls her mother, Jaya Rana. "She had to be put on a ventilator. Sapna would always tell me that if she ever got to that stage, she didn't want tubes down her throat. She told us, âI don't want this, just put me to sleep. Why do you want to see me like this?' I don't know how I convinced her to do it."
The real battle began as Sapna recovered, and was brought home, still on ventilator support. "She was super scared; to start breathing again without a ventilator felt like climbing a mountain. Doctors weren't sure whether she would pull through, but she did."
"That switched something in me," Sapna chimes in, "If I could beat this, maybe I could fight ALS too."
She started going to therapy, attending four hours of rehab - speech and swallow therapy, physiotherapy, counselling. "Happiness is a choice," she says, "I have found peace of mind and a purpose."
She texts us an extended response: "I spend my days exercising, doing speech therapy, trying to help people who have reached out to me on Instagram with resources for ALS. I'm studying again; I am currently doing an AI course to update my skills for work, and I'm doing a course on mental health to better help myself and others in my support group."
She has also found her joy again, "watching mindless stuff like the Love is Blind web series". "I love my evening strolls with the dogs," she adds. Dance is back in her life too, albeit in a different form. "She makes us all dance around her bed or around the table. And of course, one of her favourite pastimes is making me dance to her tune," her husband, Varun, teases.
This Diwali, for the first time in years, Sapna got her hair done and went shopping for new clothes. "She enjoys the little things again, like putting on lipstick, or dressing up for occasions," says Jaya.
There are things Sapna misses dearly, of course. As a foodie now entirely dependent on a feeding tube, she misses the taste of her favourites: frankie and dal makhni. She misses her Bandra apartment with the rooftop parties she'd throw there. She had moved to Bengaluru within a couple of months after her diagnosis, when the family took another big blow - her mother was diagnosed with Hodgkin's lymphoma (cancer).
"Before all of this, my life was perfect! I had a gorgeous house on Hill Road. Work was stressful, but fulfilling. After years of voicing for the radio and training new RJs, I moved on to a music label. In my first year in music acquisition, I managed to release several songs, three of which [including Paani Paani by Badshah and Aastha Gill] became super hits," Sapna shares.
Discovering new music remains her passion. "I'm currently obsessed with Ishq by Mumbai/Delhi musician Donn Bhat, Kaantha by [folk-pop band] Masala Coffee, and a few Nepali songs. I'm desperate to join a music label," she says.
Sure, she may no longer be managing a team of 50-100 people. But If interacting with her this week has shown us anything, it's that some things haven't changed at all. She still makes her loved ones dance with joy. She's still raising her voice to help others. And, we're all still hanging on to her every word.
Rs 50K-2L
Monthly medical costs for an ALS patient, depending on disease stage
5
No. of ALS patients out of every one lakh Indians
'Source: 2018 study by Indira Gandhi Medical College and Hospital, Himachal Pradesh
ALS is a neurodegenerative disease that damages nerve cells called motor neurons, progressively worsening the ability to walk, hand movements, talk, swallow and, eventually, breathe. Also known as motor neuron disease (MND), it is a rare condition with no cure. It's a diagnosis that comes with an average life expectancy of two to five years.
The rare disease had its moment in the spotlight a decade ago, when celebrities from Hollywood, Bollywood, and across the world participated in the "Ice Bucket Challenge", pouring a bucket of ice water over one's head to promote awareness of the disease.
Grey's Anatomy and Euphoria star Eric Dane was earlier this year revealed to be living with ALS. Last month, he sparked concern among fans after he was seen struggling to get into a wheelchair at Toronto Airport, appearing noticeably frail. Perhaps the most famous celebrity PALS, however, is star physicist Stephen Hawking, who was diagnosed with ALS when he was just 21. He went on to live another 55 years, till the ripe age of 76. He is remembered for using technology to maintain his independence and career, using a motorised wheelchair and speech-generating technology to communicate.
Navi Mumbai resident Dr Hemangi Sane had completed her MD in internal medicine in New York and was practising there when she started to feel the early signs of ALS. It started with weakness in her fingers, and her handwriting got noticeably bad. Unlike the doctor stereotype, her handwriting used to be "pretty good", she says with a smile. There is no straightforward path to diagnosing ALS; it involves first ruling out all non-life-threatening motor neurone ailments, and then conducting an electromyography (EMG) to confirm ALS. Dr Sane was diagnosed at The Johns Hopkins Hospital in Baltimore, US, in 2004. "Being a doctor, I know what that diagnosis meant; I broke down," she recalls. "I was so active, I used to play kabaddi in college. I enjoyed Bharatnatyam, as well as dancing in a club. I could not believe I would lose all of that."
She moved back in with her parents in Navi Mumbai. "I would just lie on my bed and cry. My parents pushed me to do rehab and try therapies. Eventually, cell therapy helped me. The progression slowed; my grip improved, speech and swallowing also improved. In New York, they had told me to put my affairs in order in 2004. I have survived for 21 years since then," she says with a wry smile.
We catch the 50-year-old driving up the bylane outside her Seawoods apartment in her motorised wheelchair, heading to her office just two minutes away. Dr Sane runs her own non-profit, Asha Ek Hope, to help others like her. The NGO provides respiratory assistance equipment to patients free of charge, along with providing nutritional guidance and psychological counselling.
"The most important thing is your mindset. Don't give up, and don't stop living your life," she says. Bharatnatyam is now a treasured memory, but the quinquagenarian still enjoys the odd night out clubbing. "ALS doesn't have to end your life. I still enjoy movies, I like to party at the disco. I just dance in my wheelchair," she quips.
One of the country's first support groups for ALS was set up by two sisters in Delhi - Satvinder and Sukhvinder Kaur, after their mother Swaranjit Kaur was diagnosed with the disease in 2008. "Back then, we had no idea what ALS was. When we looked it up on the internet, we burst into tears," says Satvinder. "Within two years, she had to be put on ventilator support. Doctors told us there was no hope, that we should just take her off the ventilator. At that time, setting up a ventilator at home was unheard of. But we rented one to fulfil our mother's desperate wish to go home," says Sukhvinder.
The sisters consulted many specialists on how best to manage their mother's care. It was hard going, but their mother's courage and their consistent efforts made it work. "After diagnosis, Mamma stayed with us for 11 years, inlcuding eight years on ventilator in a home ICU set-up. She left us in 2018. We went through numerous tough challenges during her care and medical emergencies - learning medical procedures on our own, sleepless nights, being socially disconnected, working from home to remain financially independent. But it all felt worth it," say the sisters.
Eventually, they found others facing similar struggles. "In 2015, we started the ALS Care and Support India [ALSCAS] WhatsApp group to help others with everything we had learnt. We now have 750 members across the country," says Satvinder.
One of the biggest learnings they passed on is advocating for loved ones and fighting for their quality of life. "We have countless beautiful memories with our mother that we will cherish for a lifetime. She got to enjoy spending precious time with her grandkids [their brother's children]," they say.
ALSCAS brings together ALS families to share lived experience, practical guidance, and emotional strength through every challenge of the journey, from mobility and feeding, to BiPAP and ventilator care. It also shares medical equipment with PALs free of cost.
Dr Kaustubh Mahajan, Consultant, Head, Neurology, Fortis SL Raheja Hospital
We still don't know what causes ALS. Some cases are genetic, others are what we call âsporadic'. There is no cure for the disease. There are two drugs that are approved for use by the Food and Drug Administration, namely Rilutor and Edavarone; they don't cure ALS either, but can slow the progression by a few months. There has been some talk of replacing damaged nerve cells with new cells from the bone marrow, but studies have not yet shown this to be effective. Such therapies are not FDA-approved.
ALS manifests as muscle fasciculation [twitching] and weakness in the limbs, and sometimes it can start from weakness in the tongue or swallowing muscles. Eventually, it spreads to all muscles though. The problem is that by the time we see these signs, damage to the nerve cells (anterior horn cells) is already on the severe side. From there on, the disease can progress quickly, which is why it has been a challenge to treat ALS. We've also seen that when a patient is diagnosed, their loved ones start to panic when they observe even minor twitches in their own body, and assume they too have ALS. Our muscles sometimes twitch in the natural course of life, but when that is accompanied by wasting muscle, you should consult a neurologist. If there is no accompanying wasting, it's not worrisome.
Many ALS patients now draft a living will, a legal document that specifies what life-sustaining treatments you would or would not want, such as ventilators or feeding tubes, in case you are incapacitated. Most patients decide they do not want to be placed on the ventilator because it prolongs their suffering. Making this decision in advance makes it easier for family members to respect their choices and avoid âsuffering'. It's a question of the patient's mindset; do you have a purpose and quality of life that makes it worth living under the restrictions of ALS? Stephen Hawking is a good example of this."
