In Chhattisgarh's insurgency-hit Bastar, which many reports have listed among the most backward districts of the country, an eight-year-old girl is battling a rare genetic disorder that is turning her skin into a bark-like scaly substance. This extremely rare condition is known as the Treeman Syndrome. This is the first reported case in the state.
The family of Puja (name changed) says the problem started nearly a year after she was born. The father, a small-time farmer, says first there was a small wart on her left foot. It started to expand and slowly scales began to form on both her feet. Over time, the scales moved all the way up her arms and to her neck, leaving the girl immobile and in pain.
Puja was diagnosed with the condition, also known as Epidermodysplasia verruciformis. According to medical journals, the extremely rare hereditary skin disorder is associated with a high risk of skin cancer. The condition is also called Lewandowsky-Lutz dysplasia and usually occurs in people between the ages of one and 20. According to an estimate, only 200 people across the world are known to be suffering from this disorder. No cure has been found yet.
The family did not know what was wrong with her till one day, in late November, her father took her to a government-run medical camp set up right outside their village. Puja and her family live in Tumri Gunda village in Barsoor block on the banks of the Indravati river in Dantewada district.
Tumri Gunda has a tough terrain. Its residents store up to four months of rations as, during the rains, when the river swells, the only connect the village has to the outside world, a bridge, completely vanishes. Being in the heart of the zone of Maoist influence, this village doesn't even have basic government facilities like a health centre or a clinic.
"My entire household runs on my meagre earnings as a farmer. I do not have the resources to get her treated at a private hospital. I had pleaded several times with the district authorities to help me treat her," said her father.
But when he heard about a medical camp, which was set up in an area called Pahurnar, he immediately rushed there with his daughter. The doctors there saw Puja's deteriorating condition and asked her to be brought to Dantewada's district hospital.
"When, for some reason, he couldn't do that, we sent our own team to fetch her to better understand her condition and start her treatment," said Dr DC Shandilya, medical supervisor at the hospital.
District Collector Topeshwar Verma says authorities are doing all they can to help Puja, which includes bearing the cost for her treatment. After some reports about her condition came out in local dailies, state health and family welfare minister TS Singh Deo met Puja and announced that the state would bear all the expenses for her treatment, and that the best doctors in the field would attend to her.
For the first time in her life, Puja has been attended to by so many doctors. After her diagnosis at the district hospital, she was brought to Mekahara hospital in Raipur where she is currently receiving care. The disorder is not known to have a cure yet, but Dr Mrityunjay Singh, who is treating the girl right now, says he and his team are doing all they can to help mitigate the condition as much as they can.
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