India’s 1st interactive session on scoliosis seeks to mobilise community, change attitudes

Not enough is known about scoliosis, which is a characterised by a sideways curvature of the spine. To build greater awareness and mobilise patients and their families, Scoliosis India organised an interactive session, India’s first on the condition.

Over 20 people from across India participated in the country’s first interactive session on scoliosis. The event, organised by NGO Scoliosis India, is among a series planned to build greater awareness and support.

Awareness levels about scoliosis, which is characterised by a sideways curvature of the spine is low in India. It occurs most often during the growth spurt just before puberty. Scoliosis can also be caused by conditions like cerebral palsy and muscular dystrophy.

Poor awareness about scoliosis in India

“During this lockdown people with this condition are feeling even more anxious and that led us to organised India’s first interactive session series”, says Mohammed Faisal Nawaz, Founder,Scoliosis India.

As a person with scoliosis, I noticed that patients don’t have much exposure and information about this silent and life-threatening disease. During my last surgery I pledged to do my best to contribute towards changing this and started Scoliosis India. The aim is to raise awareness and get updates about the latest technologies and expertise. – Mohammed Faisal Nawaz, Founder, Scoliosis India

Early screening is critical to treat scoliosis effectively. To enable this Faisal has submitted a plea to the Delhi High Court to start screening for scoliosis in schools. The NGO has also started India’s first accessible website on scoliosis.

Scoliosis affects girls more

A large part of the session was spent on addressing the anxiety levels of participants. Many of them have been unable to go for regular reviews and treatments due to the lockdown. Among the participants was Bijal Gada from Mumbai who is with the Nina Foundation. “I found the online discussion session on scoliosis very informative”, she said.

Dr Vidyadhar, a spine surgeon at Manipal Hospital, took questions from participants during the session. He believes regular events like these will help build awareness. “Scoliosis is a painless condition most often and awareness is very limited even among doctors. Patient education and a self-help group like this is the most essential activity that is needed today”.

Early screening programmes in schools, he emphasises is critical. “We don’t have the exact prevalence as school screening programs are not done in a large scale. Because of lack of awareness, patients present to us late with neglected Kyphoscoliosis and irreversible restrictive lung disease”.

Stigma a key challenge

The session was hosted by Sommya, a medical student. As a person with scoliosis, she is well aware of the challenges faced. “Scoliosis mainly affects girls as statistics show. A bent and rotated spine can affect the lungs and even the heart, so awareness is important”. Detecting it at the right time is critical as the consequences can be fatal, she says.

Stigma around the condition is substantial and such sessions will hopefully help overcome that. As Sommya points out, there were few parents present at the session. “It may be that they are ignoring their children’s issues or maybe they are not ready to accept what is wrong. The result is that by the time their children grow up, it becomes late for a 100% cure”.

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