Knowing how important early detection of retinoblastoma is around the world is a strong incentive for spreading awareness. Sandra Staffieri, Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, and Research Fellow at the Centre for Eye Research Australia knows only too well how dangerous late diagnosis can be for children with retinoblastoma in Oceania. She’s hopeful though that through awareness about glow detection a big difference can be made by providing simple information and she’s taking steps to make that idea a reality.
Earlier this year, as part of a two-day childhood cancer training workshop in Port Moresby, Papua New Guinea (PNG), Sandra gave a two-hour presentation to doctors and nurses who had traveled from various regions around PNG. Apart from providing them with information about retinoblastoma and early diagnosis, she distributed posters to them to display in their community centers, clinics, and hospitals. Sandra was beyond pleased with their interest and enthusiasm about sharing the health message upon their return. Even three chaplains who were in attendance were keen and excited to display posters in their churches and local shopping centers!
Thrilled to see she had such an attentive audience, Sandra was impressed with their questions and interest to ensure there was a logical pathway for referrals and care. Presenting alongside her colleagues from Australia at the International Society for Pediatric Oncology (SIOP) Oceania and Dr. Gwenda Anga, Paediatric Oncologist from the Port Moresby General Hospital, Sandra was reassured knowing that there exists a team of educated and excited health professionals ready to make a difference. Armed with the ability to evaluate children and help recognize the glow, leukocoria (white pupil), in young children in their community, it is Sandra’s hope that we are one step closer to earlier detection of blinding or life-threatening conditions such as retinoblastoma. Knowing that she can work with these people to change the trajectory for the diseases facing the children of tomorrow is inspiring.
KTG was happy to provide Sandra with the photos and images used for her posters and slideshow presentation. The attendees were encouraged to use the blank section of the posters to advise parents how to access screening or referral and to translate the phrase “Be wise, check their eyes” into the local regional dialects. The artwork provided to Sandra has since been provided to the private hospital, Pacific International Hospital, where more posters will be printed and distributed.
During Sandra and the SIOP Oceania team’s visit to PNG, they attended rounds of the 12-bed children’s oncology ward led by Dr Gwenda Anga, paediatric oncologist, and her team at the Port Moresby General Hospital . There she visited 9 patients, two of whom were being treated for retinoblastoma.
Sadly, there are no ocular prosthetics (artificial eyes) available for children who have required enucleation (surgical removal of the eye) in PNG. During her visit, Sandra showed the team how to make fun patches for children who have had an enucleation and has also procured a supply of patches donated by the team at www.specklesforkids.com to send to the region.
Sandra was amazed to see how quickly drawing a smiley face on the patch she made brought a smile to a patient’s face on the ward who had been treated for retinoblastoma for many months. Even the nurses were impressed with how such a small gesture could make a huge difference for a child.
As part of the training and presentation that Sandra provided she also educated the team about the potential of using the ArcLight for community screening. The group was extremely receptive to the idea and hope to work together as a team later this year to focus on pediatric vision screening in a coordinated program that combines the instruction Sandra provided, the information from the KTG campaign, and the utility of the ArcLight as a screening tool. We will be excited to work alongside them to make that a reality!
Sandra Staffieri stands beside Dr Gwenda Anga Paediatric Oncologist Port Moresby General Hospital