Nomesh Kumar Verma, 35 was born in a remote part of the Indian sub continent where genotype was and remains a non-issue. The surroundings where he grew up were so far away from civilization that when he visited Mumbai to participate in a leadership development course for SCD advocates at India’s premier business school, he thought he was in another world.
Diagnosed with sickle cell anaemia at the age of 7, Nomesh discontinued formal education in Grade 9, partly as a result of incessant sickle cell crises. His mom passed away when he was 10, leaving him and his younger brother in the care of a father who soon remarried.
When the home front became uncomfortable for the sickly teen, he left home with his brother in tow to face life independently.
‘I sold fruits and vegetables on the streets to survive,’ Nomesh told Sickle Cell News in an interview.
It was hardly a conducive trade for an adolescent with a potentially serious health condition. With so little education, he was unlikely ever to find a job favourable to the demands of his fragile health.
He soon abandoned street hawking and moved on to operating a small Tea and Refreshments Shop, another petty trade involving laborious undertakings. Predictably, his health soon brought the trade to a halt. The industrious youngster and his brother descended further into poverty.
At the age of 20, Nomesh had perhaps the ‘Mother of all’ SCD crises – acute chest syndrome (ACS). ACS is characterized by extreme pain in the chest, extreme pain at inhalation and exhalation and could progress to death within a very short time.
‘I feared each excruciating breath was going to be my last!’
Against all odds, he survived.
Disability and A Selfless Life
Despite surviving the Big One, petty episodes and complications did not let up. His legs became enmeshed in insidious crises that eventually relieved him of most of his locomotor skills.
‘Now I had to cope with not just SCD but with a physical handicap as a result thereof,’ says Nomesh.
Where others would withdraw from society and rue their misfortune, the courageous lad became more outgoing and sought out physically and mentally disabled people to relate with.
‘People noticed my passion for the underprivileged and the disabled and informed me about the Kalyan Divyang Sangh (Disabled People’s Organization, DPO).’
Nomesh joined the organization and soon enough became its President.
Nomesh wants to see intending couples discuss genotype early on in a relationship and take a firm decision, if they are carriers, to not pass the gene to another generation
An Impactful Life
By virtue of his position, the SCD and Disability activist attended local and regional conferences that further imbued him with confidence and a sense of purpose. An invitation arrived for him to join Saksham, a capability development course designed by Novartis India and SP Jain Institute of Management and Research.
At Saksham, he learnt for the first time that SCD was a genetic (and not a contagious or accidental) health condition. It also helped him to note the signs of SCD in some of the people he met, which emboldened him to suggest they verify their genotype.
Like most who have sickle cell disorder, Nomesh is horrified that sickle cell carriers would say ‘I do’ to one another and make their offspring bear the consequences.
Nomesh wants to see intending couples discuss genotype early on in a relationship and take a firm decision, if they are carriers, to not pass the gene to another generation.
In this epoch of a pandemic threatening not only human existence but also global business and economies, a mask-wearing DPO President is often seen in the streets of mumbai distributing face masks to the disabled and indigent. From contributions by members and some government support, the DPO also gives groceries and basic SCD medications to those who cannot afford them.
‘Helping others helps me to forget my own pain,’ he says.
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