In the summer of 2003, when most boys his age were busy choosing careers, chasing girls or playing football, 16-year-old schoolboy Danish Muneer Pandit was declared legally blind. “I was diagnosed with keratoconus, a degenerative disorder in which the vision in my right eye dropped to minus 8.5,” recalls Pandit, now 26, a student of management at Bangalore’s Jain University. “In this disorder, structural changes cause the cornea to become thinner and take a more conical shape than its regular curve,” he says.
When his condition worsened, Pandit could not read signboards or even make out letters on the blackboard in the classroom. Today, after close to a decade of running from hospital to hospital across his native Kashmir, Bangalore and Delhi, normalcy has returned to Pandit’s life after a corneal transplant. “My biggest thrill is being able to drive a car again,” he says.At another corner of India far removed from Pandit’s MBA dreams, in a village in Punjab’s Mukstar district, 35-year-old Amarjeet Kaur is rediscovering the joys of household chores. "My eyes have become changi. I can even thread a needle now," she says. Kaur, the wife of a daily wage labourer, is taking pride in such mundane tasks, since, for the last one decade, she has lived in a world of darkness. Now, after a corneal transplant conducted by Dr Ramendra Bakshi at the Delhi-based Centre for Sight, light has returned to Kaur’s life. For Dr Jatin Ashar of Mumbai’s Shroff Eye Hospital, the biggest high for corneal specialists is helping restore sight for those who cannot see.
No country for the young
Unfortunately, a huge proportion of people affected by corneal blindness in India are children and teenagers, a demographic of people who have their entire life ahead of them. “The number of blind children in the country is estimated to be 680,000,” says Dr Radhika Tandon, vice president of the Eye Bank Association of India. “Certain children suffer from genetic disorders and are born with a cloudy cornea. Also many kids who play with sharp objects (pencils, sticks, bows and arrows) and firecrackers suffer eye injuries,” says Dr Ramendra Bakshi.
The first step in recovery after surgery is sensitivity to motion. In a few weeks, a child can make out faces of loved ones. In a few months, he or she acquires the ability for visual image parsing. “Parsing, or the ability to break up the visual array into distinct objects, is critical for making sense of the world. And that means the world to the parents,” says Dr Ashar. He recalls the case of a one-year-old Mumbai child, the son of working professionals, who was born with corneal opacity. “Now, at 13 months, after a repeat corneal transplant [one that is performed after the first transplant is not a success], he has retained his binocularity and is able to reach out for objects such as toys. His parents are on top of the world. The earlier the transplant, the greater the chances of recovery,” says Dr Ashar.
The Indian irony
Although India has highly qualified surgeons, the shortfall in eye tissue means close to 11 lakh blind people in the country are waiting for corneal transplant. According to a study by the Eye Bank Association of India, the incidence of corneal blindness is rising at the rate of 25,000 people every year. And the number of corneas donated every year struggles to keep pace with it, says Dr Radhika Tandon of the Eye Bank Association.
Around the world, even in tiny Singapore, the cultural acceptance of donation is so high that consent is implied. “It is ironic that barring China, we have more people than anywhere else in the world and a country like Sri Lanka still exports corneas to us,” says Dr Ritika Sachdev, additional director, medical services, Centre for Sight Group of Eye Hospitals.
As a people, most Indians are reluctant about donating the eyes of their loved ones when they die. “It is not a tradition to donate. The percentage of people on the street who are aware about the need to donate eyes might have gone up. But when you go and ask them if they are going to donate their cornea after they die, the answer is likely to be no,” says Dr Sachdev.
Dr Anand Shroff of Shroff Eye Hospital says certain communities such as the Jains lead the way in eye donation in Mumbai – their religion perceives organ donation as the ultimate charity. “Although many more people are pledging their corneas, unless their loved ones call an eye bank in time, the pledge card is just a piece of paper.” The easiest strategy once you decide to make the gift of sight is to call the centralised national eye bank number, says Dr Sachdev (see box).In case you want to pledge your eyes, you could again dial 1919 and ask the eye bank representative go help you fill a donation form. Even those who wear spectacles, patients of diabetes or hypertension can help bring light into the lives of the blind. Have you pledged your eyes, yet?
Gautam Gambhir, Cricketer
“You just need to shut your eyes for 10 seconds to realise how visually challenged people feel! If anything those 10 seconds and little empathy towards their challenges has been an inspiration to donate my eyes. In our country, seeing a public figure donate organs can lead people to do the same. I hope more and more people come forward to make a difference to the lives of affected people.”
Juhi Chawla, Actress
“My husband’s family has their ancestral home at Porbandar in coastal Gujarat. In 2008, on one trip there I was requested to be the guest of honour at a hospital where an eye camp was being held. After hearing the stories of people, of children who gained their sight through the camp, whose life was transformed from a world of darkness to light and colour, the immense joy of parents whose children could now see, I pledged to donate my eyes as well.”
Lead kindly light
A few celebs who’ve pledged their eyes:
Actors Aishwarya Rai, Juhi Chawla and Rani Mukerji, cricketer Gautam Gambhir and choreographer Farah Khan are among the biggest names promoting awareness about
the need to pledge one’s eyes.
Know your cornea
The cornea is the outermost covering of the eye, a transparent sheath responsible for transmission of light. If the cornea becomes cloudy from disease, injury, infection or poor nutrition, vision can diminish dramatically or completely. Corneal blindness can be treated by replacing the damaged cornea with a healthy donated human cornea. After removal, the eyes are analysed, processed at the eye bank and then the cornea is transplanted within the next 96 hours.
Eye banks fall under the Human Organ Transplant Act and are given a registration after inspection by competent authorities. Donated eyes cannot be bought or sold as it is a crime under the Act.
Eye bank numbers
AIIMS, National Eye Bank:
National Eye Donation Number: 1919
Talk to the eye bank manager on 1919, fill the pledge form online or mail it to the eye bank. Make your family aware you’ve donated your eyes. Or fill up a pledge form at your nearest eye bank.
Frequently asked questions
Q: How quickly should the eyes be removed after a person dies?
Six to eight hours after the person dies
Q: Who can be an eye donor?
People of any age, even those who wear spectacles or contact lenses, patients of diabetes or hypertension can donate eyes. However, the consent of the next of kin is essential for removing the eye after the donor's death.
Q: Is the entire eyeball removed during the procedure?
No, only the cornea (a portion of the surface of the eye) is removed. The eyeball remains intact after the cornea is removed and a transparent eye cap is placed in the eye in place of the removed cornea
Q: Will the donor or recipient family know the identity of the recipient?
No, the information is kept strictly confidential.
Q: Is it necessary to pledge eyes before death?
Pledging of the eyes is important, but the consent of the family members is essential, because the corneas can’t be removed without their consent. So, it is important that one shares his/her wish to donate the eyes with the family members. Even if the donor has not pledged his eyes, the relatives can take the decision for eye donation
Q: Is it necessary to take the donor to the hospital?
No, the eye-bank team will go to the donor’s residence or the hospital and perform the corneal excision. The corneal excision procedure takes just 25 minutes.
Q: What happens to corneas not fit for transplantation?
Corneas that are unfit or rejected are used for medical research and training purposes.
Q: Are all corneas fit for corneal transplantation?
After collecting blood samples, corneas of persons suffering from HIV and Hepatitis B are considered unfit for transplant.
(Courtesy: Shroff Eye Hospital, Mumbai and the Centre for Sight Group of Eye Hospitals, Delhi)
From HT Brunch, June 30
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