India’s face for the rare genetic disorder progeria, 15 year old Nihal Shrinivas Bitla succumbed to his condition in Telengana on Tuesday. Nihal’s efforts in creating awareness about the disorder in India has been very impactful and he was the face of Progeria Research Foundation’s campaign to detect undiagnosed children living in India.
What is Progeria?
Hutchinson-Gilford progeria syndrome, commonly known as progeria is the condition where a child ages eight times faster than normal. This gives the child a much shorter life span than other children their age. Such children usually die of a heart attack or stroke. The genetic mutation occurs randomly and isn’t inherited.Symptoms, such as slow growth and hair loss, begin to appear in the first year or two of life.There is no cure for progeria, but medications may alleviate symptoms or delay progression.
Nihal and his family who live in Bhiwandi (suburb of Mumbai) were in Telengana to attend a wedding. Nihal was severely dehydrated and was admitted to a local hospital. Doctors suspect that hardening of arteries which is a condition common in the elderly, led to restricted blood flow and his sudden death.
Nihal’s Diagnosis
Dr. Parag Tamhankar from the National Institute for Research in Reproductive Health diagnosed NNihal with progeria when he was 10.
Nihal was brought to him with complaints of stiffness of bones and wrinkles on his face. It was in 2014, that Nihal along with another 3 year old boy Ishan, also suffereing from Progeria went to Boston to undergo clinical trials of a cancer drug meant to slow accelerated aging
A campaign called #finding60 in India works towards finding undetected cases. The campaign is spearheaded by Team Nihal under the guidance of the Progeria Research Foundation. The foundation estimates at least 60 children in India suffer from progeria. So far only four, including Nihal have been diagnosed. Nihal’s efforts in finding two more cases were tremendous – 5 year olds Aditya from Rajasthan and Prachi from Patna.
In 2009, 56 children globally were diagnosed with the condition. However, now 125 children have been found. Despite being the face of progeria in India, Nihal had to deal with stigma associated with the disease and stopped going to school. He enjoyed painting and had a great opportunity to meet his favourite Indian actor Aamir Khan.
According to Dr. Tamhankar children with progeria generally appear normal at birth. It is during their first year then that symptoms like hair loss, slow growth begin to appear. While the disease has no complete cure, new drugs and treatments are increasing the life expectancy of children along with better quality of life as well.
Image Credits: ABP Live