Jhunjhunu (Rajasthan), Sep 2 (IANS) Darkness has become a life-long curse for two generations of a family in a Rajasthan village. This family has 15 members, including eight children, who are blinded by daylight.
Eighty-year-old Elayachi Devi of Chandawa village near Alsisar town in Jhunjhunu district, some 150 km from state capital Jaipur, has six sons and a daughter. Three of the sons, Jeetaram, Jagdish and Palaram, and the daughter, Sursi Devi, were born with the disease where they can’t see in the day but can after dusk.
Jeetaram’s wife Sharda, their six daughters and a son have day blindness too.
Jagdish’s wife Raina and son Rahul and Sursi Devi’s two daughters are also visually challenged.
“I have seen members of this family. The condition they suffer from is called cone dystrophy. They are not able to see in daylight, but can see after sunset. In this family, the condition is hereditary,” Kishore Kumar, professor of ophthalmology at the Sawai Mansingh Hospital in Jaipur, the largest government-run hospital in the state, told IANS.
Kishore Kumar explained that the condition is characterised by vision loss and sensitivity to bright light. In some cases, colour vision is poor. Patients suffering from this disease can often see better at dusk.
“The disease is quite rare. In all my 25 years as an eye doctor, I have come across only two or three patients with this disease, apart from this family,” Kumar said.
Handicapped and unable to earn a livelihood, the family finds it hard to make both ends meet.
The village has no school for the blind and so the children stay home.
Jeetram told IANS that life has been a struggle, and the situation has become unbearable.
“People think of us as a bad omen. They mock us. No one wants to see members of my family first thing in the morning. Villagers avoid passing by our house in the morning as they think we are cursed, and the curse would rub off on them,” said Jeetaram.
The family thus stays indoors till about 10 a.m. “We don’t want to cause any inconvenience to our fellow villagers. If they don’t want to see us early morning, so be it,” said Jeetaram, who is in his mid-30s.
Jeetaram explained that since he and his two brothers cannot see clearly in bright light, they have tried to make ends meet by polishing and repairing shoes in the village and a nearby town.
However, what they earn is only a pittance, hardly enough to feed the large family.
“It’s impossible to have a decent life with the income earned this way. We are completely broke,” Jeetaram said.
“Local doctors say that the disease is hereditary and very difficult to cure. We would like to consult expert doctors in bigger cities, but we cannot afford that,” he said.
The family claims that it has approached the district administration and local politicians several times for financial assistance, but to no avail.
“Nobody has come forward to get us out of this life-long misery. Some social organisations helped me get my daughter married a few yeas ago, but we have received no help from the government,” said Jeetaram.
(Anil Sharma can be contacted at anil.s@ians.in)
