Scoliosis is bending young India's spine

It was Sebanti Roy’s dance teacher who first noticed an asymmetry in her student’s shoulders. The aspiring dancer’s movements were off. Shortly after, the then 13-year-old was diagnosed with scoliosis. “Initially, I was oddly enthusiastic about the diagnosis, as my childhood idol, Hrithik Roshan [a famous film star known for his dancing skills] shared the same condition,” Sebanti recalls laughing.

Roshan’s scoliosis was diagnosed when he was 21, and he was told he would never dance. Scoliosis causes the spine to curve sideways. Everybody has regular curves in their spines, but in kids and teenagers with it, the spine – or parts of it – curve abnormally in the shape of an ‘S’ or ‘C’.

The teenage Sebanti travelled from her home in South 24 Parganas to Kolkata to have surgery for adolescent idiopathic scoliosis (AIS). The procedure involved the insertion of two rods and 14 screws in her back to straighten her spine.

“I don't feel a thing now,” she says, 12 years later. “Life is normal. I learnt to live with scoliosis and got back to normal life,” she adds smiling as she speaks. We are sitting on the roof of her grandfather’s home in Diamond Harbour, a town in West Bengal where the Hoogly passes before it empties into the Bay of Bengal.

While Sebanti’s scoliosis caused her to be awkward, for millions of other patients, the disease is painful, debilitating, and can lead to heart issues and breathing discomfort. For patients in rural areas, even the first step of getting the right diagnosis is a challenge.

Like Mohammed Jamil’s (name changed) a young boy from Salar town in Murshidabad who lived with severe pain. His parents who work as migrant labour, in both agricultural and construction, had lost hope of their young teenage son ever walking again. They told PARI, “Jamil had lost mobility. The spinal deformity compressed his nerves and muscles. He was in pain and weak, unable to bear weight.”

However, a lucky break got them a meeting with senior spine surgeon, Dr. Saumyajit Basu. And in the summer of 2022, Jamil underwent surgery, and took his first painless steps.

Sebanti too, her back and posture rectified, went on to perform on stage and has built a career as a theatre artist – a testament to her resilience, and the remarkable human capacity for healing. “I have done several stage performances with my theatre team,” she tells me. Behind her lie props from her shows, stored on the roof.

“We travelled,” the 25-year old adds, emphasising the normalcy she reclaimed. And scoliosis, a dreaded condition that once threatened to rule her life, became a mere footnote.

When the fastest man in the world – Usain Bolt – revealed in his autobiography that he had scoliosis, the disease got an international face. Bolt’s uneven gait is now the focus of a research study looking into the biomechanics of the 100 and 200 metre Olympic champion.

Worldwide, the occurrence of scoliosis is quite high – two to four per cent and it affects girls more than boys. In India, there is both a lack of awareness and ignorance, says this report published in 2022. AIS is not the only form of scoliosis – there is congenital, neuromuscular and degenerative.

As a spine surgeon, Basu has seen many patients come too late, or remain undiagnosed. “Many doctors among us don't have a clear idea. How many articles have you seen or read about scoliosis? Even the Indian government is yet to publish data on it,” says Basu, former president of the Association of Spine Surgeons of India (ASSI). This lack of data and information is holding back support for those affected, he adds.

Scoliosis is typically detected through physical examination, including the observation of posture and spinal alignment. It is confirmed and measured using x-rays to determine the curve's severity. But if you live in rural West Bengal, a basic x-ray poses a challenge as there is a two-thirds shortfall in the positions for radiographers in the state (Rural Health Statistics 2021-2022). Only a third of Community Health Centres (CHCs) even have a radiographer.

Further, after the x-ray, consulting a specialist is almost impossible as the shortfall of specialists in rural area of the state is seriously alarming – only six per cent of positions are filled. Locating qualified medical professionals specialising in scoliosis detection is a further challenge for patients in rural areas. This along with the long wait times for appointments, holds families back from reaching out.

And then there is the misinformation and misguided advice that anxious parents and patients receive.

Khokon Paik says wrong advice not only prolonged their daughter's suffering but also depleted their savings. “I have spent between two and three lakh rupees. It’s a big amount for a person like me,” says Paik who earns around Rs. 8,000 a month pulling a goods cart in Patharpratima village. Most families like his raise money for medical treatment through private loans which come with high interest rates.

His daughter, nine-year-old Soma Paik initially complained of pain in her back, and soon life was a daily struggle. “The increasing pain made it difficult for her [Soma] to hold a pen,” recounts her father, sitting in their small kuccha house in South 24 Parganas district of West Bengal. Her school work suffered, and that further distressed her and her family.

The pain worsened over the years, eventually robbing Soma of her mobility; she was unable to even breathe properly. The family became increasingly desperate to find a solution, and over the next three years they consulted healthcare providers and explored different treatment options. This was emotionally exhausting and a big financial strain.

Khokon Paik vividly remembers the day they finally reached the Spine Research Foundation (SRF), a moment filled with both anticipation and anxiety. SRF is a non-profit in Kolkata that has been funding spine surgeries for underprivileged families over the past 16 years.

“It's so lovely to see our daughter back on her feet again. We never imagined the surgery would be so successful. Thanks to all doctors, we are blessed,” her father tells PARI.

Filmstar Hrithik Roshan was fortunate to be diagnosed early and the right exercise could fix his scoliosis. But for Soma, the lost years meant surgery was the only option. “If detected early, there is seldom a need for an operation. We can fix the curve of a spine just with the help of brace or simple exercises. For us operation is always the last option, adds Dr. Trinanjan Sarangi. A neuro-anaesthesiologist and founding trustee at SRF, he has seen more cases than he can remember in his 15 years of working.

“An operation is a huge financial burden for families – deformity correction operations could cost between 5 to 15 lakh rupees,” he adds. The number of surgeries, the choice of imported or local screws, the recovery time in hospital, all add up. Insurance companies generally don’t cover the cost of scoliosis surgery, he points out, even though this is not a cosmetic surgery, but a prophylactic one.

Surgery was also the only option for another young girl from South 24 Parganas, West Bengal. Fifteen-year-old Minakshi (name changed) lives in a rural area and was unable to access an early diagnosis.

“My daughter couldn’t stand for more than 10 minutes at a time and had lost her strength. It was heart breaking to see our once energetic girl unable to get out of bed,” says her father, Nirmal Sarkar, a resident of Diamond Harbour. Working as manager in a fish storage unit here, he earns around Rs. 10,000 a month. The cost of surgery for his daughter was equal to six years’ salary. “We were struggling. We lost hope,” he told PARI, speaking at the bustling fish storage at Diamond Harbour, West Bengal.

A chance introduction to SRF changed that. “Two weeks after the operation, my daughter was back on her feet. Now, she's all set to take her Class 10 examination,” says the joyous father. And the girl who had lost the ability and strength to walk, now cycles to school everyday.

All the doctors I met were emphatic that educating children and parents about the disease is critical to arrest the condition. SRF has initiated a screening programme in underprivileged schools in and around Kolkata. “Surgeons associated with us visit the school clinics regularly at their own cost,” says Dr. Saumyajit Basu.

In his bi-weekly clinic dedicated to scoliosis, Basu sees around 40-50 patients. I was part of one such clinic where he was speaking to the family of a patient from Nadia district of West Bengal, explaining how the braces had not halted the progress of scoliosis, and why surgery was crucial to save her mobility and even her cardiorespiratory functions.

I watched parents struggling to ask questions, but also fearful of the answers: “Can she go to school? Can she go to swimming classes again? What if she can't walk again?”

Basu reassured them but also cautioned: “the things your daughter can't skip are the exercises.” He added that a physiotherapist from their team would be in touch throughout the recovery process.

Post-operative physiotherapy is the last mile. I joined Shouvik Ghosh, a physiotherapist visiting a patient who had undergone surgery in December 2024. His happy manner is an instant reassurance to his patients.

We went to a slum in Hooghly district where 14-year-old Sahana Parveen (name changed) lives with her parents. As we stepped inside the room 10 x 12 feet, we quickly spotted the young girl walking around without any support.

Sahana beamed with joy on seeing Ghosh whose team has visited her multiple times following her scoliosis surgery. She paused briefly mid-stride to say: “Ever since I had the surgery done, no one looks at me differently. I feel very comfortable and confident. And I will definitely do the exercises.

But now I am going upstairs to feed the pigeons.”