Progeria Cases in India – Nihal and Ali Hussain Khan
Hutchinson–Gilford progeria syndrome, commonly known as progeria, is the condition where a child ages eight to ten times faster than normal and hence has a much shorter life span than children their age. Such children usually die from a heart attack or stroke. According to Progeria Research Foundation, there are around 80 known cases of progeria worldwide including 18 known cases in United States and 4 progeria cases in India. These are only documented cases, estimated cases are around 200-250, of whom 60 are thought to be in India.
There have been four diagnosed progeria cases in India, i.e. Ali Hussain from Bihar, Nihal Bitla from Bhiwandi, five years old Aditya from Rajasthan, and Prachi from Patna.
Case1: Nihal Shrinivas Bitla, First Reported Case of Progeria in India
Nihal Bitla was born with the rare genetic disorder Hutchinson-Gilford Progeria Syndrome, commonly known as progeria, causes accelerated aging in children, leading to premature death. Death mostly due to stroke, heart attack, arthritis, and hardened arteries that leads to have restricted the blood flow.
Nihal was born into a middle class family in Bhiwandi, on the outskirts of Mumbai. His appearance on his first birthday caused his parents some consternation. He had wrinkles, hair loss, and an unusual-looking face. Doctors told them their son had progeria.
Later, when Nihal turn 10, he looks 60. Nihal’s family took him to the National Institute for Research in Reproductive Health in Mumbai, where Dr Parag Tamhankar handled his case. Nihal, also a part of clinical trial for the drug Lonafarnib in Boston to test whether it can slow down ageing in children.
Nihal Bitla, who became face of progeria campaign in India, dies at 15. Doctors suspect that Nihal’s hardened arteries, a condition common in the elderly that restricts blood flow, contributed to his sudden death.
Even as he suffered from health problems, his last days were spent in his grandparents’ city Karimnagar with his entire family as they had gathered to celebrate a wedding in Telangana. On Monday evening, his parents said he felt dehydrated due to the scorching heat and had to visit a private hospital for treatment. Within a few hours, he passed away.
Team Nihal under the aegis of PRF is running an awareness campaign called #finding 60 in India to locate undetected progeria cases.
During the last two years, Nihal had increasingly started spending time surfing on the internet looking for and to connect other patients of progeria in India. Nihal, the face of India’s progeria awareness not only fought progeria but also helped other children affected by the disease live a normal life. Nihal also used social media platforms such as Facebook and Twitter to do his bit for progeria awareness. After he dies at 15, his family will continue their support to increase awareness on the disease and help other families who have children with progeria disease.
Nihal Bitla Social Connect:
Nihal’s dream come true when Bollywood star Aamir Khan met Nihal Bitla in December 2015 after his Facebook post about his wish to meet his favourite actor went viral. Nihal also gave him one of his paintings. A Facebook page in the name of Team Nihal posted with multiple images of Nihal and Aamir: “Thank you Aamir uncle for making my dream come true.