With reported incidences of Retinoblastoma (life threatening eye cancer affecting new born and very young children up to 5 years of age) increasing over the years, doctors unanimously recommend that screening of eye for any abnormality in infants/toddlers should be made mandatory. Further, doctors suggest that systemizing eye screenings for infants/ toddlers will go a long way in detecting lethal eye cancers and preventing childhood blindness.
Retinoblastoma (RB) is a life-threatening eye cancer affecting new born and very young children up to 5 years of age. It can occur either in one eye or in both. Although it is a life-threatening cancer, majority of the children could survive and retain vision if RB is detected in its early stage. Data from different sources reveal that every year globally over 8,000 new cases are reported of which easily 1,500 cases are from India. However, the reality is many cases of RB goes unreported/ undetected and also awareness is abysmally low especially in India and more so in rural areas.
RB at its early stage is just not easily identifiable but for some telltale symptoms including a white shiny spot, squinted eye, swelling of the eye and continuous watering. As RB progresses a white mass from within the eye becomes prominent. Even this is often missed. As RB further progresses, the eye becomes painful, red and swollen. If not properly diagnosed and treated at this stage, the cancer spreads outside the eye, over time there is every chance of it spreading to brain and other parts of the body and it becomes a threat to life.
Mr. Thanmaya Bekkalale, who is Founder Trustee, Iksha Foundation (a Bengaluru-based NGO supporting children with Eye cancer), says “We only know the reported cases of RB, there are numerous cases that go unreported. The need of the hour is to spread individual and societal awareness about RB and promote early detection as it is documented that every day 4 children are born with eye cancer in India and one of them facing death as a result of diagnosis at advanced stage or not diagnosed at all”
According to Dr. Gagan Dudeja, Consultant, Orbit Oculoplasty & Ocular Oncology, Narayana Nethralaya, “Awareness about Retinoblastoma is low and early detection is crucial to give the best chance of saving the child’s vision, eyes and life. Early detection and proper treatment will ensure 95% of the children diagnosed with RB are saved from death, 90% have their eye intact and 85% have their vision protected.”
Further, he pointed out that, unfortunately in Indian scenario a child is taken to an eye specialist only when there is any notable problem, which makes treatment of RB at a later stage much harder. Against this background, he suggested that systemized screening of eye for any abnormality in infants/toddlers should be made mandatory and sensitizing doctors & healthcare authorities at different levels assumes great importance and opines that RB screening with an ophthalmoscope by a trained doctor will be beneficial in detection.
Dr. Fairooz P Manjandavida, who specializes in Retinoblastoma and Eye Cancer, Director at HORUS Specialty Eye Care and Consultant at Prabha Eye Clinic & Research Center, pointed out that RB is completely curable if detected early with currently available advanced treatments. Awareness regarding the disease can save many lives, eye and vision. If a white spot is seen in child’s eye on flash photography it is a matter on concern and need immediate attention. Thorough eye examination with an ophthalmologist is mandated and further referral with eye cancer specialist if required.
Dr. Fairooz says “Being a genetic disorder, RB can run in families. Early screening of babies born to parents with RB and genetic tests will enable families to know if their child has a risk of RB. Pediatricians being the first point of contact for parents, plays a major role in early detection. White reflex, squinting and redness of eye in a newborn or infant can be an indication of underlying eye cancer. We should all join hands to ‘fight the white’.”
According to Dr. K. Bhujang Shetty, Chairman, Narayana Nethralaya, facilities for genetic testing and counseling should be made available for all children with Retinoblastoma. He also is of opinion that the research in India can take the lead in creating novel therapies that can improve upon currently available treatment.
According to Mr. Thanmaya Bekkalale, Founder Trustee, Iksha Foundation (a Bengaluru-based NGO), “We only know the reported cases of RB, there are numerous cases that go unreported. The need of the hour is to spread individual and societal awareness about RB and promote early detection as it is documented that every day 4 children are born with eye cancer in India and one of them facing death as a result of diagnosis at advanced stage or not diagnosed at all”
To create awareness on RB, one week in the month of May (starting from second Sunday of the month – May 13 to 19, 2018) was observed as World Retinoblastoma Week. Given the low priority given to RB as compared to other disorders, Iksha Foundation is keen to build visibility about RB among various stakeholders and ensure that the message of early detection is communicated amongst the masses. This becomes vital as it is a fact that parents and even healthcare personal are not even aware about RB symptoms.