Kunti is grappling with a devastating condition that has caused a gradual curvature and diminishment of her bones over the past decade. Once standing at a height of four feet, she has now dwindled to a mere two feet, rendering her entirely reliant on assistance. A medical professional examining her case suspects she may be afflicted with osteogenesis imperfecta (OI), commonly known as brittle bone disease. She aspires to consult doctors in larger cities in India, hopeful that they can offer treatment to restore her ability to walk.
Residing in a rural village in Chatra, in the eastern state of Jharkhand, India, Kunti began experiencing issues with weak bones at the age of nine. The ailment steadily advanced until eight years ago, leaving her completely immobile and confined to bed.
Devi Tilakwa, Kunti’s 60-year-old mother, bereaved of her husband 12 years ago, is inconsolable over her daughter’s condition, which she describes as making her resemble a ‘corpse.’
Ms. Tilakwa shared, ‘She was a normal girl with healthy limbs, but when she entered her teenage years, her bones began weakening, and she struggled to walk. Initially, she limped slightly, but gradually, she lost all strength and started shrinking. Within eight years of this mysterious disease, she lost all strength and became bedridden.’
OI results from a genetic mutation affecting collagen production, a crucial component of connective tissues found throughout the body. The deficiency in collagen leads to curved and fragile bones, coupled with muscle weakness. The severity of the disease varies from person to person.
Kunti’s older siblings—two brothers and a sister—are unaffected by the condition. The initial symptoms manifested in 2007, with Kunti undergoing surgery to strengthen her weak left leg. Unfortunately, after a brief respite, her condition began deteriorating, resulting in the loss of strength in all her limbs.
Kunti expressed, ‘I was always weak and could never run fast. I was a slow walker, and as I grew up, I had to push my left leg. That’s when my mother took me to a doctor for treatment. The bone specialist operated on my left leg, but after a month, I couldn’t move the leg.’
