Monday January 8, 2024
Worldwide, many children with eye cancer are diagnosed late. Early diagnosis saves lives, and offers the best opportunity for safe vision saving therapy. Leukocoria awareness advocate, Megan Webber, explores why glow awareness and community eye screening are vital to early detection and referral, and how Know The Glow and WE C Hope are helping to ensure children receive timely, effective care.
Childhood is a time of joy, growth, and discovery. As parents, caregivers, and guardians, we cherish the countless moments captured through photographs – precious memories frozen in time. Yet, amidst the smiles and laughter, there lies an invisible threat that can affect a child’s eyesight as the WE C Hope community knows all too well:
In this blog post, we’ll explore the significance of Glow Awareness and how Know The Glow is shedding light on early detection. We’ll also find out how the small but powerful Arclight is changing the landscape of eye health care and early detection for the world’s most vulnerable children, and how Know The Glow and WE C Hope are involved.
Retinoblastoma is a rare form of eye cancer that primarily affects children aged 0-5 years. The cancer originates in the retina, the light-sensitive tissue at the back of the eye responsible for vision. It often presents itself with a subtle yet distinct sign – a white glow or reflection in the affected eye. Medical professionals call this “leukocoria.” We simply call it “the glow.”
This sign, while rare, is often the only early indicator, warning families of what is happening to their child’s vision. Fortunately, it is such a unique sign that once people know what to watch for, the glow is unforgettable.
The glow offers another gift for those of us working to find children with retinoblastoma or the equally rare Coats’ disease. As well as being an early sign of Rb, leukocoria is also an indicator of more than 20 other potentially blinding pediatric vision conditions.
So watching for the glow is a simple way to spot the very rare diseases, and the most common ones like amblyopia (lazy eye), strabismus (squint), pediatric cataracts and ametropia (refractive error). Broadening the discussion from focus on one potentially fatal but rare disease to many can capture significantly more children with a wide variety of treatable vision concerns.
Lastly, in building awareness of this early indicator, we have the gift that information sharing is free! The pathway to early detection only requires awareness; we are not asking the general public to go through extra tests, blood draws, doctor visits or exams unless or until they spot this glow in their child’s eye. Hoping to work together to prevent potentially devastating outcomes, this is a huge advantage.
Know The Glow is a nonprofit organization dedicated to raising awareness about the glow (leukocoria), and promoting early detection through Glow Awareness. The organization emphasizes the importance of paying particular attention to the glows captured in flash photographs, as these can be indicative of an underlying eye issue, including retinoblastoma.
Educational information for early detection also includes details about squint, and watching for a fleeting flash or glow in the pupil of the eye, potentially seen in a dimly lit room. For example, when near a window while the rest of the room is dark, while breastfeeding, or laying a child into a crib/bed.
The initiative encourages parents, caregivers, and healthcare workers to be vigilant when reviewing family photos, observing a child’s eyes, or performing the fundal reflex eye exam. Early detection can significantly improve the chances of successful treatment, with potentially less invasive therapies.
Many families in low and middle income countries (LMICs) do not own a camera or smartphone. A device may be shared by an entire family, village, or wider community. In this situation, awareness of the glow is critical for several reasons.
- Photos of the child may not be reviewed by the child’s parents or caregivers, but by elders or another member of the community who manages the camera/phone.
- The glow may only be seen with the naked eye, in dim light. This is usually fleeting, and other people usually doubt the observer. By the time the glow is consistently visible to the naked eye, retinoblastoma is a medical emergency.
- Families who do not own their own camera or smartphone are also unlikely to have swift access to healthcare. If a white glow is seen in the eye, but the child is otherwise well. The high costs of travel, accommodation, and eye exam can seem unnecessary, and may be prohibitive.
Alongside public and healthcare provider awareness, community eye screening is the best way to capture these vulnerable children who so often fall through the huge gaps in healthcare access. That’s why we have embraced The Arclight Project as a partner in Glow Awareness and early detection around the world.
The Arclight ophthalmoscope is a small device making big waves in the medical world. Developed by Dr. Andrew Blaikie and his team at the University of St Andrews in Scotland, this compact eye screening tool is a portal to accessible eye care, especially in regions with limited resources.
The challenges of poverty and limited specialist healthcare provision mean that for the child with retinoblastoma in a LMIC, early detection is even more critical; often it is the key difference between life and death.
The Arclight is a low-cost, high-tech, sustainable, and portable ophthalmoscope, empowering healthcare workers everywhere to screen children for early signs of eye disease. It is an indispensable ally in the fight against preventable blindness and death from retinoblastoma and other childhood eye conditions, and a testament to the power of innovation to transform healthcare.
Know The Glow and WE C Hope love the Arclight for its design specifically focused on service in low resource communities, where retinoblastoma and other blinding eye conditions have the most devastating impact.
Here are the things we most love about the Arclight ophthalmoscope:
Affordable and Accessible
Traditional ophthalmoscopes that many of our readers will be familiar with are expensive aid difficult to maintain in resource-limited settings. The Arclight Project aims to make eye care more accessible and affordable, particularly in LMICs. At the time of publication (2024), a single Arclight device costs less than $20 to buy.
The device is solar-powered, making it an ideal solution for use in areas with limited or unreliable electricity. This environmentally friendly feature also reduces the need for costly and polluting disposable batteries.
Compact and Portable
The Arclight is small, lightweight, and highly portable. This makes it ideal for medical professionals travelling to remote areas and navigating potentially difficult terrain to reach the communities they care for.
Smart Screening Device
The Arclight can be with a smartphone to enhance its diagnostic capabilities. The smartphone camera can capture images and video of the eye, using the Arclight’s illumination and magnification tools. The built-in clinical light source allows clear visualization of the retina and other structures within the eye.
Images and video can be stored for later review, and shared with professional colleagues for consultation and further guidance on care. This telemedicine is especially useful in remote and resource-limited settings where advanced diagnostic tools and specialist care are unavailable.
This handy ophthalmoscope also functions as an otoscope (for examining the ear) and has a built-in clinical light source. This increases its utility and value in the resource-limited setting.
Training and Education
Dr. Blaikie and his team have also focused on training healthcare workers to use the Arclight, which is crucial for effective diagnosis and referral. Programs and materials have been developed for in-person group training and remote learning, catering to different circumstances around the world.
Smartphone setup of the Arclight also allows educators to perfectly demonstrate eye examination in training settings. Captured images and video can become teaching aids, and review of difficult diagnostic cases supports continued learning.
Collaboration and Distribution
The Arclight Project collaborates with organizations, eye hospitals, and medical teaching programs to distribute the devices widely, train healthcare professionals in their use, and monitor the impact of their implementation.
Research and Development
Dr. Blaikie’s team conduct ongoing research and development to improve the Arclight device and adapt it to the needs of healthcare providers in different settings. Many of their partners conduct research to understand its impact and where additional supports are needed to aid diagnosis and referral.
For example, in Tanzania, researchers are following the children whose Arclight exam identified suspected retinoblastoma, and triggered a referral to specialist care. They want to know how many of those reach the second stage of care, the supports families need to ensure they follow through on the referral, and the causes of a child failing to reach specialist care – even after early detection.
This approach resonates deeply with the ethos of Know The Glow and WE C Hope –empowering healthcare through education, research, and collaboration. This collaboration sets a new standard in global eye health advocacy, sharing knowledge, bridging gaps, and striving to ensure all children have access to life and sight-saving eye health care, wherever they live in the world.
So in the Fall of 2023, we began a new partnership with the Arclight Project. WE C Hope has so far committed 300 Arclight devices across 6 countries – Tanzania, Kenya, Uganda, Ghana, Nigeria, and Nepal. Some are already in use on the front line of patient care; some are waiting to be shipped as plans are finalized with teams on the ground in each country.
Know The Glow is working to provide country-specific awareness and educational materials to compliment community outreach initiatives where the Arclights are/will be deployed.
As the 7th One Rb World conference in Hawaii approaches in October, we hope to expand this partnership to LMICs across the Pacific. An exceptionally remote region of the world where outreach community eye care and public Glow Awareness is particularly impactful.
We look forward to bringing you more news about the Arclight partnership throughout 2024.
Glow Awareness has immense power to improve early detection globally, saving children’s lives and sight. Public and healthcare education promotes eye health and empowers communities. Know The Glow is active on all fronts.
Early Detection Saves Life and Sight
Understanding the glow and being aware of its significance empowers parents to seek timely medical attention. Early detection often leads to more effective treatment options and a higher likelihood of preserving a child’s vision. In many regions of the world, this parental awareness and early detection is critical to save the child’s life.
Promotes Eye Health
Glow Awareness prompts families to be proactive about their eye health. If there’s an overlooked area of childhood wellness worldwide, it is eye health and vision care. Encouraging families to visit their eye care practitioners if they see the glow can be the beginning of a healthy approach to pediatric vision checks around the world.
Fosters a Collaborative Community
Know The Glow extends its reach to researchers, doctors, nonprofit organizations, and healthcare professionals, emphasizing the role each plays in recognizing and raising glow Awareness. By fostering a community of Glow Aware individuals, the initiative strives to create a collective effort in the fight against retinoblastoma.
Glow Awareness isn’t just about recognizing the glow; it’s about creating a culture of empowerment within communities. The more people know about the glow, the more lives and sight can be saved through early detection and intervention. This is of particular concern in LMICs around the world where retinoblastoma’s presentation is far too often late-stage and extraocular at diagnosis.
The more people engage with KTG, the more easily they find their way to organizations like WE C Hope to take the baton post diagnosis. Those organizations help support and guide families in their treatment and aftercare, and the families also become awareness advocates and support for newly diagnosed families.
Know The Glow works with partners around the world to raise Glow Awareness. Our collaborators include health-focused organizations like the ArcLight Project and WE C Hope, medical professionals, researchers, family and survivor advocates, and student and community organizations.
Collaborating with a range of organizations strengthens our collective impact globally. By partnering and working side by side, we aim to create awareness campaigns that improve early detection rates in countries around the world. Collaborative advocacy ensures the message of Glow Awareness reaches far and wide, transcending borders to make a meaningful impact on a global scale.
Highlighting Best Practice and Uniting Stakeholders
Know The Glow seeks to highlight the brilliant work of medical professionals globally who diagnose, treat and care for children with retinoblastoma and their families. We spotlight inspirational and influential doctors, nurses, community eye health workers, researchers, NGOs and other advocates making a standout difference in their respective countries and areas of work. Sharing information so others may follow in their footsteps to help facilitate awareness, detection, referral, treatment, and care in the new and unique ways that are changing lives across the globe.
Cheering on this incredible community and helping to connect everyone together is one way we assist our KTG partners worldwide, and support the journey before, during, and beyond diagnosis. Committed healthcare professionals, researchers, NGOs, and family advocates together are needed to overcome many of the challenges families face when a child has suspected or confirmed eye cancer.
Our materials, digital images, and stories are permanently available to be used in new and unique ways to help strengthen awareness programs internationally. All this content is free of charge as we do not sell anything at KTG. All that we have, we offer freely if it can be of help to our local partners, ambassadors, and practitioners.
Family Stories and Global Ambassadors
Parents and caregivers are often the people best placed and most keen to share the important message of glow detection with new parents around the world. Personal stories of retinoblastoma journeys make an impression in a way that no glossy marketing photo can. Sharing the real life experiences of the brave children and their inspirational families is one of the things we most love doing at KTG.
We get to know these parents, and many wish to be involved with Glow Awareness in their country. Incorporating into our team those who want to keep the conversations going has led to over a dozen international KTG parent or survivor Ambassadors. They help us develop new awareness raising ideas, as well as brainstorming and connecting with individuals who can highlight the message in their country.
Student Organizations and Chapters
Tech and social savvy students have transformed the awareness-raising landscape for KTG. Who knows social media better than the university aged students of today? Who knows more about how to make a message spread virally?
Partnering with student communities like Santa Clara University, the University of Notre Dame, and Manila Central University in the Philippines has opened completely new pathways for sharing information. We can also simultaneously educate the parents of tomorrow as those students help us educate and support today’s young families.
Know The Glow is a beacon of hope, guiding parents and caregivers through the journey of Glow Awareness. By understanding the significance of the glow in photographs, we can collectively take a stand against retinoblastoma and ensure that every child has the best opportunity to overcome cancer with good sight, and enjoy a long, happy, healthy life.
Know the glow, spread the awareness, and let’s make a difference in the lives of our precious little ones. Together, we look forward to a year of shared life-saving, sight-saving, community-building awareness, worldwide.
Retinoblastoma awareness and early detection is a global challenge, with no single solution. .Sessions from past One Rb World meetings show many opportunities exist to improve early diagnosis in all regions of the world.
National and global collaboration between retinoblastoma specialists, researchers, parents, survivors, and other advocates can dramatically improve care for each child with eye cancer, survivor, and their family.
If you would like to join our global community sharing knowledge and experience, learning from one another, addressing early detection and other priority subjects together, we welcome you to the 7th One Rb World meeting, October 15-17 2024 in Honolulu, Hawaii. The meeting will be held just before the International Society of Paediatric Oncology World Congress which takes place 17-20 October, 2024 at the Honolulu Convention Centre.
One Rb World is community, conversation, and cooperation. An inclusive global collaboration for optimal lifelong care. Children are welcome too – One Rb World is proud to offer a full child life program for Rb patients, young survivors, siblings, and children of adult survivors!
Megan Webber is the Co-Founder of Know The Glow. A non-profit organization aimed at globally eliminating preventable childhood blindness through building awareness of the characteristic white glow in a child’s eye. She is also a Foundation Board of Trustees member at Children’s Hospital Los Angeles, and has served on multiple boards of organizations dedicated to supporting the doctors and patients at CHLA.