New Delhi, May 24 (IANS) ‘Donate Life’ founder Nilesh Mandlewala and haemophilia survivor Dr Suresh Hanagavadi have appealed for organ donation of brain-dead patients and reservation in jobs for those affected with haemophilia, respectively.

Both of them will be presented the Padma Shri by President Droupadi Murmu during a ceremony at Rashtrapati Bhavan on Monday.

The Padma Shri awardees expressed gratitude to the Centre, Prime Minister Narendra Modi and Home Minister Amit Shah for the recognition.

Speaking to IANS, Mandlewala said that he does not consider this honour a personal achievement, but a tribute to the entire organ donation movement in the country.

“I believe this honour belongs to all those organisations across the country and every individual involved in the noble work of organ donation, who work day and night to save precious lives. It is also an honour for those families who have donated the organs of their loved ones post their death.”

He also credited the Surat police for making Gujarat’s first green corridor for organ transplant.

He recalled that the need for organ donation began with his father’s suffering. “I could not save my father, but we have so far conducted more than 1,300 successful organ donations.”

Referring to Prime Minister Modi’s vision of ‘Viksit Bharat’ for the centenary of India’s independence, Mandlewala said: “We have set a mission that in 2047, when our country celebrates 100 years of independence, no patient in India should die because of not getting an organ in time.”

“For the past two years, the country’s biggest strength — the youth — has been connected to this campaign so that the younger generation can take charge of this noble cause in the future,” he added.

Emphasising that prestige brings greater responsibility, Mandlewala said: “This award will be meaningful only when we are able to promote organ donation and establish transplant facilities in those states of the country where this process has not yet begun.”

Urging organ donation, he said that millions of people who die every year due to a lack of organs can get a new life.

Thanking the PM for the honour, Dr Hanagavadi mentioned that haemophilia is a low-volume and high-cost disease that carries many consequences.

“Disability is very common; most of our children with haemophilia become disabled by the time they reach adolescence. However, disability in haemophilia is preventable,” he told IANS.

A survivor of the disease himself, he mentioned that the only way to prevent bleeding episodes and joint damage in the disease is by providing prophylactic treatment. “Newer treatments like ‘non-factor therapy’ can be provided for those lacking the blood-clotting proteins,” he said.

Dr Hanagavadi noted that ​many of the affected children are unable to attend school, and absenteeism is high. “Therefore, through prophylactic treatment, we can definitely improve their quality of life,” he asserted.

The doctor appealed to the government to create a conducive environment for children with haemophilia so that they can grow uneventfully.

Moreover, he also appealed for job reservation for people with haemophilia. “Since haemophilia is a lifelong disorder, they face many psychosocial challenges and difficulties in pursuing education. Providing job reservation under the Rights of Persons with Disabilities Act, 2016 would have a significant positive impact on families affected by haemophilia,” he said.

–IANS

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