KTG India Ambassador, Larry Wagh, opened a new chapter for KTG in Kenya when he introduced KTG to Ms. Michelle Obat and Dr. Esther Nafula, Palliative Care Experts he’d recently met during the St. Jude’s Conference he attended in the United States. In a “glowincidental” encounter, Larry connected these remarkable individuals with KnowTheGlow founder Megan Webber. The meeting became an eye-opener to the remarkable strides these women have already made in building palliative care programs for families dealing with Retinoblastoma diagnoses in Kenya.
Palliative care, once considered exclusively for end-of-care assistance, is now recognized as a broader service offering with a crucial role in caring for patients and supporting their families. Ms. Obat, Dr. Nafula, Larry and Megan shared a mutual belief that the hands of early detection and palliative care should work closely once a diagnosis is made.
Ms. Esther Nafula, focusing on pain and palliative work with retinoblastoma families at Kenyatta National Hospital, primarily deals with the often excruciating pain management associated with extraocular retinoblastoma. She has a deep understanding of the importance of early diagnosis and she has witnessed the heartbreaking loss of many Kenyan children due to the delayed detection of retinoblastoma. Although her team is often involved only after the disease is identified, she sees the importance and the incredible opportunity in educating the public about the glow‘s ability to aid in early detection and in fostering faith in inclusive hospital programs. Driven by the hope of demystifying eye diseases, she envisions palliative care teams offering psychosocial support through education programs, guiding families from early detection to graduation from palliative care.
Ms. Michelle Obat, Medical Oncology and Pediatric child health, Emergency and Critical Care clinician at AIC Kijabe Hospital, echoed Dr. Nafula’s sentiments. While AIC’s Retinoblastoma cases are often referred to Dr. Nafula’s team, Ms. Obat works with many local families struggling with various pediatric cancers some of which present with orbital and periorbital lesions. Grateful for the developing resources she sees growing in Kenya, she envisions an integrated healthcare approach, utilizing the existing resources for a more comprehensive vision care narrative. Recognizing Kenya’s success in immunizing more than ¾ of the nation, she hopes that combining KnowTheGlow’s messaging, vision health education, and the journeys of retinoblastoma families could significantly impact early detection. Sharing stories of palliative graduate families navigating their way successfully through treatment could dramatically influence the families of tomorrow.
Larry expressed his enthusiastic support for the possibilities of the future, highlighting the rapid changes seen in such a short time. Transforming the narrative around vision issues in Kenya and engaging in pediatric vision health and screening could significantly alter the palliative care experience shifting its focus from end of life care to psychosocial support. With the nation investing in palliative care programs, the benefits are starting to emerge, even though currently only 5% of families needing care are serviced. With growing government recognition and integration into care packages, the numbers are expected to rise, offering a beacon of hope for Kenyan families.
Aware that 50% of retinoblastoma deaths globally occur in Africa, the imperative of palliative care is clear. However, with awareness, education, and intervention, it is hoped that this statistic will dramatically decrease. Impacting potentially devastating outcomes through simple awareness. Knowing that resources like Ms. Obat and Dr. Nafula, along with hospitals like AIC Kijabe and Kenyatta National Hospital, exist in the country, is inspiring for KnowTheGlow. Larry and Megan are eager to explore more ways to collaborate with these extraordinary doctors to find and guide to care for those children in Kenya still waiting to be found.
