Ten-year-old Sindhu* went for a routine medical check-up soon after her family moved from Bengaluru to San Francisco. As part of a series of tests that are administered as a matter of routine to adolescents in the United States, a doctor performed the Adam’s forward bend test, asking Sindhu to bend forward as much as she could. He noticed that the right side of her ribcage was a little higher than her left – a misalignment called a “rib hump”. The doctor diagnosed her with scoliosis, a disorder that had caused her spine to bend sideways, her doctor said. An X-ray confirmed his diagnosis.

The spine is made of 33 bones, each with a disk between them. “In a normal, healthy spine, the entire column should fit like building blocks,” said Dr S Rajasekaran, chairman of the department of orthopedics, trauma and spine surgery at Ganga Hospital in Coimbatore and chairman of the International Research Commission, AOSpine in Switzerland. “When viewed from the rear, the spine of an individual with scoliosis may look more like an “S” or a “C”, rather than a straight line.”

Scoliosis affects about 5 million people in India, that is 0.4% of the population. But the prevalence among children is much higher – more than 39 million or 3% of all children.

Dr Saumyajit Basu, consultant spine surgeon at Park Clinic and Kothari Medical Center in Kolkata sets out what we know about the causes of such bent spines. “In 70% of the cases, scoliosis is idiopathic – that is, the cause is unknown,” said Basu, who is also a deputy editor of the Indian Spine Journal and secretary of the Association of Spine Surgeons of India. “The rest of the cases are either congenital (caused due to abnormal development of the spine in the growing foetus), or because of some neuromuscular anomaly (affecting nerves that control muscles) in the patient as a result of which the spine gets bent.”

Some studies suggest that carrying heavy school bags, especially on one shoulder instead of two can worsen the condition but most doctors say such lifestyle factors cannot cause scoliosis. “It has been proven that scoliosis cannot be induced by uneven mechanical loading of the spine,” says Dr S Vidhyadhara, head of the department and consultant spine surgeon at the Manipal Spine Care Centre in Bengaluru. “School bags cannot be blamed for the progression of the condition. The progression of the curve is mostly genetic. We need more research to reach a firm conclusion.”

Lack of screening

Even though scoliosis experts emphasise the need for screening children to catch the disease early, this is a challenge in India. A birth defect like scoliosis will show up on scans like X-ray, magnetic resonance imaging or MRI and computed tomography or CTs.

“Though congenital scoliosis is often detected, it’s not a part of our national newborn screening program nor is it included in our routine check-ups for children,” said Dr Saravanan Muniasamy, pediatrician and head of Rio Children’s Hospital in Madurai. “As a result, it is often diagnosed at a much later stage, when the curvature of the spine is visible and severe.”

Scoliosis in an adult is often due to a gradual degeneration of the spine. Sometimes secondary infections like polio can lead to neuromuscular weakness that causes scoliosis too. In such cases, many related complications may arise, such as diminishing lung capacity, excessive pressure on the heart and a decline in physical activity, said Dr Rajasekaran.

On International Scoliosis Day on June 30, Princess Eugenie of England’s royal family discussed her struggle with scoliosis in an emotional post on Instagram.

Straightening the curve

While idiopathic scoliosis can develop at any time in life, it usually affects two age groups – 8-9 years, which is classified as juvenile scoliosis and 10-12 years, which is called adolescent scoliosis. Sindhu’s scoliosis, for example, is idiopathic.

“During this phase, when children experience a growth spurt, those diagnosed with scoliosis need to be monitored closely to judge how much the spine has tilted and to prevent further deterioration of spinal growth,” says Dr Rajasekaran. Periodic X-rays are prescribed to check the progression of the curve.

If the spine further degenerates, the child may need surgery once he grows into an adult. However, when scoliosis is caught and corrected early, further curving of the spine can be prevented with a scoliosis brace. A scoliosis brace is a stiff plastic jacket that fits around the chest, extending from beneath the arms and completely covering the base of the hips. It has straps to keep it in place and to straighten the spine.

“One of the most significant research efforts in recent years was the BrAIST trial (Bracing for Adolescent Idiopathic Scoliosis) which demonstrated conclusively that bracing in adolescents with moderate scoliosis is effective in preventing surgery for a significant number of patients,”said Tressa Goulding, executive director of the Scoliosis Research Society in Milwaukee in the United States. “That study supports the need for screening to identify scoliosis earlier and help prevent surgery.”

Doctors often recommend that children with scoliosis wear their braces through their growing years. Sindhu, for instance, has been given a Wood-Cheneau-Rigo brace to wear for two years after puberty.

“The brace needs to be kept on for 23 out of 24 hours to be effective,” said Dr Rajasekaran. “It also needs to be of the best quality and must be customised to specifically fit the child’s spinal curve”.

Sindhu’s brace was built specifically for her body measurements and for the correction she needs but she found it terribly uncomfortable at first.

“She had to go for several fittings and measurements, and once the brace was complete, she had to go again many times and get adjustments made until it felt comfortable,” said her mother. “We chose this brace because it is light and supposedly corrects well, though it is probably the most expensive, and has buckles in the front so that she can put it on and off herself. I don’t need to help her in any way. She takes care of it completely on her own.”

Wearing a brace can have a big psychological impact on a child. “She often mentions how she can’t wait for the day when she can sleep without the brace at night,” said Sindhu’s mother. “A week ago, she told me that just thinking about the fact that a brace is temporary, that she doesn’t have to wear it forever, gives her the strength and tolerance to put up with it.”

In India’s tropical weather, the discomfort of the brace can be intense, says Dr Basu. It can restrict you from playing sports and engaging in any strenuous activity. This is often the reason that children abandon their braces halfway through treatment.

Braces are also expensive. A brace in India can cost between Rs 15,000 and Rs 20,000 making this treatment largely inaccessible for patients from lower income groups.

Surgery for scoliosis

Muhammad Faizal Nawaz, now a 35-year-old activist and social worker in New Delhi, was afflicted with and treated for polio in his shoulder when he was just three months old. He did not realise that the polio had significantly weakened his nerves and muscles. He loved sports, but he did not have the stamina to play. “I would feel breathless in just a few minutes,” he said. “It reached a point where I could not eat, walk or even breathe properly.”

Mohammad Faizal Nawaz before his last spinal surgery in 2012.

When he was 13 that he got was finally diagnosed with a form of scoliosis called kyphoscoliosis – kyphosis meaning hunchback. The disease had severely affected the thoracic or upper region of his spine, creating an abnormal and excessive curve that resulted in a hump-like appearance. The hump compressed his heart and lungs, making breathing difficult. Over the years, Nawaz has undergone five spinal surgeries, to both correct the abnormal spinal curvature and to prevent it curving further. The surgeries involved inserting metal rods into his spinal column to straighten it.

While adults with scoliosis cannot benefit from using braces and must often endure surgery, cutting-edge therapies are now making treatment easier, said Dr Rajasekar. Intraoperative computer navigated surgery for scoliosis for instance, involves a very precise computer-generated assessment of where along the spine the surgeon must insert the titanium screws to align it best. Precision is critical in this surgery, so as not to damage the nerves that originate from the spinal cord. Patients who have had surgery also need physiotherapy after the procedure to strengthen their muscles.

Nawaz calls his final surgery, “a miracle treatment,” which helped straighten his spine and has allowed him to find relief from pain. He now runs the Scoliosis India page on Facebook to raise awareness about the condition. The groups has 800 members and has been operational since 2012, dating back to Nawaz’s first scoliosis surgery.

After surgery, Nawaz says that he is far more mobile. While he does suffer the occasional respiratory distress, with regular physical therapy and a positive outlook, he says he has overcome the biggest challenges that scoliosis had posed.

*Name changed on request