Pune: For six-year-old Anant (name changed), playing outside with children of his age is a distant dream for even a simple scratching or rubbing of his skin causes it to blister and peel off, leaving him with wounds and ulcers.
Suffering from an extremely rare skin disorder dystrophic epidermolysis bullosa, the boy’s skin started scaling off over his forehead, behind ears, on the back and limbs soon after birth. And the symptoms have worsened since then, making his skin as fragile as a butterfly’s wings.
“Even simple scratching or rubbing of his skin causes it to blister and peel off, leading to painful wounds and ulcers. We have to use a variety of ointments, creams and moisturizers to keep his skin smooth and supple,” the boy’s father, who runs a small printing business in Chikhali, said.
The family is spending Rs 10,000 every month towards his treatment, which they find extremely difficult to manage. “Since Anant has blisters even inside his mouth, he cannot eat solid food. He is only on liquid diet,” the father said. The disease is found to occur only in one per million live births, experts said. “India has no official count on the number of cases as we don’t have a national registry,” senior dermatologist Neeta Gokhale of DY Patil Medical College and Hospital, Pimpri, said.
“The exact subtype of this rare skin disorder can be ascertained concretely through antigen mapping or genetic analysis. Both these tests are very expensive and the child’s family cannot afford them,” skin specialist Aayush Gupta, who runs the genodermatoses laboratory at the hospital, said.
He added, “The boy cries a lot. He has wrinkled and eroded skin and has no fingers or toes,” he said. Experimentally, experts said, the child’s condition can almost be cured using genetically modified skin graft. “However such a treatment, which only specialized labs may be able to attempt, is extremely expensive and requires government approval,” they said.
Treatment plan
The only treatment for this condition is extreme lifestyle changes, including wearing multiple layers of pads (bandages) on bony prominences, specialized dressing techniques and paediatric plastic surgery to improve defects when they arise.
