WCNR 2018: Spinal cord injury survivors share their inspiring stories

Adil Ansari (36) has 90 per cent paralysis for last 15 years but that hasn't stopped him from holding two Limca Book record for bike riding and car driving. However, it took him four years to get a fitness certificate for the license. Adil and many like him, were part of second day two of the 10th World Congress for Neurorehabilitation to discuss spinal cord injuries at length in its public forum

WCNR 2018: Spinal cord injury survivors share their inspiring stories

The session was spearheaded by Nina Foundation and its members focused on various issues related to spinal cord injuries and dealing with them.

Dr Ketna Mehta, founder of Nina Foundation pointed out how a city like Mumbai lacks a world class spinal cord injury rehabilitation centre, which is need of the hour. “The World Health Organisation (WHO) describes spinal cord injury as the most devastating injury in the universe. It is medically complex and life altering. There more than 2 million spinal cord injuries in India. Still, in a city like Mumbai, we do not have world class rehab centre for spinal cord injuries. It is because of the patient’s own determination, support and care of the family, along with the efforts of doctors and therapists that they are thriving,” said Dr Mehta.

WCNR 2018: Spinal cord injury survivors share their inspiring stories
Dr Ketna Mehta

17 years ago, the Nina foundation was started by Dr Mehta and her brother, it exclusively works for the rehabilitation of economically and socially disadvantaged people with spine injuries.

While speaking at WCNR 2018, Dr Mehta said more and more people should know about spinal cord injuries and support towards the rehabilitation.

The spinal cord injury survivors who were present at the event shared their inspiring sagas and challenges faced by them. They said there is a need for an inclusive environment for spinal cord injury patients. They also pointed out the need for having an infrastructure friendly approach for people with spinal cord injuries. They also highlighted the need to have cost effective devices, more rehabilitation centres and trained professionals for neurorehabilitation.

Dr Mehta emphasised the need to have a registry for spinal cord injuries. “We do not know how many actually have spinal cord injuries. The prevalence rate, incidences, morality etc, are still unknown because a registry is not in place,” explained Dr Mehta.

She also insisted on the need to have a separate Act on spinal cord injuries. “We as spinal cord injury survivors know the gravity of living with spinal cord injury. In foreign countries, there is separate Act for spinal cord injuries. It is high time that India too gets one,” said Dr Mehta.

The session also had Dr Humberto Cerrel Bazo of Motto di Livenza in Italy giving a talk on new approaches in management and rehabilitation of spinal cord injury. In his presentation, Dr Bazo gave a brief history of spinal cord injury.

“The history of spinal cord injury date back to ancient Egypt. For a long time it was labelled as an ailment that cannot be treated. It took 4,000 years for the ailment to be treated,” he explained. Dr Bazo agreed that uneven statistics is the biggest challenge for the global mapping for spinal cord injuries

“The data was interpretable only for the regions of North America, Western Europe and Australia,” he said.

In his presentation, he said spinal cord injury is associated with the risk of developing secondary conditions like DVT, UTI, muscle spasms, osteoporosis, decubitus, chronic pain and respiratory complications can be debilitating and even life-threatening.

Dr Bazo said spinal cord injury needs acute care, rehabilitation services and on-going health maintenance that are essential for prevention and management.

“Many of the consequences associated with spinal cord injury do not result from the inury itself, but from inadequate medical care and rehabilitation services and barriers in the physical , social and policy environments. Implementation of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) requires action to address these gaps and barriers,” concluded Dr Bazo.