Progeria, scientifically known as Hutchinson–Gilford progeria syndrome, is an exceptionally rare genetic disorder that causes affected children to age at a rate eight to ten times faster than their peers. This accelerated aging process drastically reduces their life expectancy, often leading to premature death due to heart attacks or strokes. According to data from the Progeria Research Foundation, there are approximately 80 documented cases of progeria worldwide. Among these cases, there are 18 known instances in the United States and a mere four documented cases in India. However, it’s crucial to acknowledge that these numbers represent only the documented cases, and estimates suggest there may be around 200-250 individuals affected by progeria, with an estimated 60 of them residing in India.
In India, there have been four diagnosed cases of progeria, each presenting its unique challenges and stories of resilience. These cases include Ali Hussain Khan from Bihar, Nihal Bitla from Bhiwandi, a five-year-old named Aditya from Rajasthan, and Prachi from Patna.
Case 1: Nihal Shrinivas Bitla – The First Reported Case of Progeria in India
Nihal Bitla’s journey began in Bhiwandi, on the outskirts of Mumbai, where he was born into a middle-class family. His parents noticed something amiss on his first birthday when they observed wrinkles, hair loss, and an unusual facial appearance. Concerned by these unusual signs of aging, they consulted doctors who diagnosed Nihal with progeria, making him the first reported case of the disorder in India.
As Nihal continued to grow, the effects of progeria became increasingly apparent. By the age of 10, he appeared to be a 60-year-old man. Nihal’s family sought medical intervention at the National Institute for Research in Reproductive Health in Mumbai, where Dr. Parag Tamhankar managed his case. Nihal also participated in a clinical trial for the drug Lonafarnib in Boston, aimed at investigating its potential to slow down the aging process in children with progeria.
Despite his health challenges, Nihal emerged as a prominent figure in India’s progeria awareness campaign. Regrettably, Nihal’s life was cut short at the age of 15, with doctors suspecting that his hardened arteries, a condition commonly associated with the elderly, played a role in his untimely passing.
Case 2: Ali Hussain Khan – The Boy With the Body of a 110-Year-Old
Ali Hussain Khan, a 14-year-old from Bihar, India, is one of the rarest progeria cases in the country. Despite the toll that progeria has taken on his body, causing him to physically resemble a 110-year-old, Ali remains resolute in his hope for a miracle cure. He aspires to extend his life into adulthood.
Ali’s parents, Nabi (50) and Razi (46), are first cousins, and their union resulted in eight children, six of whom have been afflicted by progeria. Tragically, four of their progeria-affected children passed away between the ages of 12 and 24. Another child, who exhibited symptoms of progeria, tragically succumbed within 24 hours of birth. Two of the couple’s daughters, Sanjeeda (20) and Chanda (10), were born without the genetic disorder, offering a glimmer of hope amidst the family’s adversity.
The family’s progeria journey commenced in 1983 with the birth of their first daughter, Rehana, who displayed no initial signs of the disorder. Doctors at that time were perplexed by this mysterious condition, as progeria was poorly documented and understood. The term “Progeria” had not yet entered their lexicon, and medical professionals had little knowledge of it. Reflecting on this, Nabi lamented the lack of awareness, saying, “If a doctor had perhaps told us about this genetic disorder, we would’ve stopped having children.”
Today, Ali Hussain Khan and his parents receive care and support from the SB Devi Charity, a charitable institution based in Kolkata. Dr. Chandan Chattopadhyay, a pediatrician from Kolkata, introduced the family to this organization, which now covers all of Ali’s medical expenses.
Cases 3 and 4: Aditya from Rajasthan and Prachi from Patna
While Nihal Bitla and Ali Hussain Khan have garnered attention as prominent cases of progeria in India, there are two other documented cases in the country: Aditya from Rajasthan and Prachi from Patna. It’s important to emphasize that progeria remains an extraordinarily rare genetic disorder, with an estimated incidence of just 1 in 8 million live births. Tragically, children born with progeria have a limited life expectancy, typically only reaching their mid-teens or early twenties.
Progeria poses significant challenges to affected individuals and their families. These cases in India underscore the critical need for ongoing awareness efforts and research aimed at enhancing our understanding of this exceedingly rare disorder and improving the lives of those affected by it.