Winter 2008
World Rb Awareness Week
The Global Eye.
Welcome
Eye Contact
Art for Eyes Paint Day
Toronto Bluejays Game
David M Bailey Concert
4th Annual Blind Ball
Harry’s Farewell.
Research Matters
Toronto Protocol
Eyes on the World
World Rb Awareness Week
In the Spotlight
Katy's Story
Brady's Story
Focused Care Q&A
Implants..
The Art of Child Life
Going to the Ocularist.
Snap Shot
Honduras.
World Rb Citizen
Timothy Murray MD
Kids Corner
Valentine Fun..
Points of View
Have Your Say.
Diary Dates
What's Happening?
When cancer is contained within the eye, surgical removal of that eye is curative, but early diagnosis also enables the use of established treatments to prevent loss of the eye, and preserve vision. Retinoblastoma that has spread beyond the eye is often fatal, even with intensive chemotherapy, radiation and bone marrow transplant.
92% of children affected by retinoblastoma live in less economically developed countries, and though curative enucleation for intra-ocular disease is available in most of these countries, access to appropriate
Throughout much of the world, death from retinoblastoma is due to (1) late diagnosis when retinoblastoma has spread into the brain and/or bone marrow; (2) sub-optimal application of resources due to delayed and incomplete pathology reports; (3) inadequate resources to support family care when the cost of medical bills, travel to access treatment, lack of family accommodation near hospital and fear of mutilation and blindness upon removal of the eye forces abandonment of therapy.
While survival is above 96% in resource-rich countries, approximately 75% of children treated at advanced medical centres experience the loss of one or both eyes in order to achieve a cure. In the process of fighting for their vision, many children endure several years of intensive therapy, and repeated relapses before cure is attained.
Lack of awareness is the biggest hurdle to achieving early diagnosis, essential for survival and vision-salvage therapy. The most common early sign of retinoblastoma, a “white pupil”, is often missed or misdiagnosed at multiple levels (primary care physicians, healthcare personnel, pediatricians, ophthalmologists, oncologists, parents, the public). The intensive therapy required for treatment of extensive retinoblastoma places considerable burdens on the family and health care system, with generally unfavourable results in developing countries. When early diagnosis is achieved, the costs of medical care are significantly lower.
Increased awareness of retinoblastoma can optimize opportunities for cure of affected children. Survival among children in developing countries, and successful vision-saving therapy for children in resource-rich countries can be improved through simple education campaigns which highlight the easily detectable white eye reflex.
During the last decade, retinoblastoma awareness campaigns in a number of developed and developing countries have clearly demonstrated the value of educating primary health care providers and the general public about the early signs of retinoblastoma. Posters, flyers, T-shirts, audio-visual materials and media coverage have all been utilized to promote awareness and understanding of retinoblastoma.
World Retinoblastoma Awareness Week provides a platform on which to build locally inspired educational campaigns around the globe. This annual event was launched in 2007 by Daisy’s Eye Cancer Fund and the UK Childhood Eye Cancer Trust, and runs from the second Sunday in May, for seven days.
During the first awareness week, simultaneous media coverage of retinoblastoma was achieved on six continents. Parents and health care workers contacted local newspapers, television and radio stations to share their experiences with retinoblastoma and draw attention to the tell-tale cat’s-eye reflection in a child’s eye. Flyers were handed out to new and expectant mothers and mailed along with Snapfish® developed photographs. Children gave presentations in science classes and wrote articles for school magazines. Posters were distributed to parent-toddler groups and paediatricians offices in a number of countries.
Following the success of last year’s campaign, the 2008 week (11-17 May) will continue to focus attention on the white eye reflex that is such a powerful tool to stimulate early diagnosis. We encourage you to become involved in this year’s campaign by printing posters and posting them in areas frequented by the parents/carers of young children. You can also contact your local media outlets and encourage them to run a story or public service announcement on retinoblastoma and leukocoria during awareness week.
World Retinoblastoma Awareness Week helps to ensure that local medical professionals and the general public are educated on detection of the “white pupil” as an early clinical feature of retinoblastoma. This will lead to earlier diagnosis, reduced mortality in resource-limited countries and increased eye preservation in resource-rich countries.
In time, increased public awareness of retinoblastoma will also help to combat stigma associated with removal of an eye, which is traumatic for families, and often a barrier to effective care in developing countries. This annual awareness week will also help to educate people about the challenges of childhood cancer care in the resource-limited setting, where 92% of affected children live, stimulating support for projects which aim to improve care for these youngsters.
As a global retinoblastoma community, we can work together to vigorously counteract the endemic lack of knowledge that hinders survival and vision-saving care for all our children. We hope you will join us in supporting this year’s campaign - for sight, and for life.
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To learn more about World Awareness Week and to download awareness resources, please visit out Taking Action section:
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