By Anjali Madan
New Delhi, May 10 (IANS): Rahul is lucky to be alive and to see the beautiful world, even though with just one eye. His elder sister was not so fortunate, as late detection of eye cancer proved fatal for her.
"We learnt our lesson after losing our daughter and kept Rahul under close medical observation since birth," said Kavita, Rahul's mother.
When Rahul was eight-month-old he was detected with cancer of the eye retina, also known as retinoblastoma (RB).
"Doctors at RP Centre in AIIMS, alerted us that there is a high probability of siblings developing the same ailment; so we kept a close watch in his case," Kavita, who now works with the Parent Support Group (PSG) of NGO Cankids...Kidscan, told IANS.
Rahul, 16, now uses an artificial eye and studies in Class 6 of a government school in Delhi.
As in the case of Rahul, early detection and a mother's vigilance also saved the life of Mumbai girl Akansha, 16.
The Class 10 student was detected and treated for eye cancer at Tata Memorial Hospital when she was eight months old.
Her mother Anita, 42, is also a survivor of eye cancer. In her case, the ailment was detected when she was just over two years old.
Anita, who now works with the NGO, said: "The hereditary nature of eye cancer is visible clearly in our family. My daughter got it after me. We suspected this could happen."
Retinoblastoma is a rare eye cancer that usually develops in early childhood, typically before the age of five. The life-threatening cancer develops in the retina, the light-sensitive tissue at the back of the eye that detects light and colour. Unlike in other childhood cancers, retinoblastoma can also be hereditary in some cases.
According to Cankids chairperson Poonam Bagai, the NGO is preparing to launch a nationwide awareness programme as part of the World Retinoblastoma Awareness Week May 12-19. The NGO's campaign will continue till May 26, well past the outcome of the Lok Sabha election.
"The awareness campaign, to be launched under the Sajeev Cankids Retinoblastoma project, is focussed on the central message of early diagnosis and identifying the white eye reflex. Partnering with RB Centres across the country the aim is to drive up Indian survival rates for retinoblastoma (50-70 percent) to that of the developed countries (90-95 percent)," Bagai told IANS.
Doctors often suggest a flash photo test to detect eye cancer. The test requires taking a flash photograph of your child. If there is a white shining spot inside the eye, it could be retinoblastoma.
"We have a 52 second simple flash photo spot on our website and on Youtube in 10 Indian langauges at rb.cankidsindia.org," said the NGO's Awareness Officer and cancer survivor Kapil Chawla.
Santosh G. Honavar, director of ophthalmic and facial plastic surgery and ocular oncology at Hyderabad's Centre for Sight Superspeciality Eye Hospital and a Cankids advisor, said: "Globally about 9,000 new cases of retinoblastoma are reported every year."
"The incidence is about 1 in 10,000 live births. Knowing that 26 million children are born in India every year, the logical estimate is about 2,500-2,600 new cases of retinoblastoma a year. I would stick to this number, which is easier to justify in the absence of any hard data," Honavar added.
Center for Sight and Hyderabad's L.V. Prasad Eye Institute are among the 15 centres of excellence for retinoblastoma treatment in India, partnering with Cankids in its prevention.
Bagai recalled how one of their awareness campaigns on eye cancer managed to save the life of a boy from Jammu and Kashmir.
"We had uploaded a video clip on YouTube showing how flash photography can help detect retinoblastoma. A family in Kashmir saw that and came to Delhi to seek help from our NGO for treatment of their son," she said.
"Our NGO's parent support group (PSG) facilitated the boy's checkup at AIIMS and they are now satisfied with the progress," she said.
The PSG comprises volunteer-parents whose children have battled the disease.
Priti Rastogi, mother of eight-year-old eye cancer survivor Gungun, works in the NGO's unit in Lucknow's King George's Medical University and helps young eye cancer patients and their parents get over the initial hitches before treatment.
"Most parents get worried when told that the afflicted eye needs to be enucleated and taken out," she said.
"My daughter has been living with an artificial eye since she was a year-and-a-half old. I tell other parents about my daughter to convince them that their children's future would be safe.
"We educate parents of the children to use the artificial eye as not removing the cancer-afflicted eye of their child can mean not just losing vision but also life. Retinoblastoma spreads fast and through the optic nerve into the brain," Rastogi added.
The PSG also gives emotional support to patients and their parents.
"Most volunteers share their own life experiences and make an instant connect with the parents whose children are undergoing treatment and support them," said Bagai.