In a recent heartfelt and impactful conversation, Megan Webber, co-founder of KnowTheGlow, and Helene Dameris, Director of Global Outreach for KnowTheGlow (KTG), connected with several key figures from Greece who are deeply involved in the fight against pediatric cancer and retinoblastoma (RB). The triangulation of patient families, NGOs, and physicians illustrates how their collaboration is often essential in guiding a patient to comprehensive care, with each party playing a crucial role in awareness, support, and treatment. This discussion highlighted the community effort required to support families navigating the challenging journey of RB treatment and underscored the critical need for increased awareness and local treatment options.
Menia Koukougianni, the Co-Founder and CEO of NGO Karkinaki-Awareness for Childhood and adolescent cancer, a Greek non-profit organization dedicated to informing the public about pediatric cancer, shared her insights and experiences. Karkinaki has been instrumental in raising awareness and providing resources for families affected by various pediatric cancers. However, Menia noted a significant gap in awareness and treatment for RB in Greece. One of the first tweets by Menia’s organization featured the KTG story. Retinoblastoma (RB) is not well-known among families and children in Greece. Since RB treatment is not available locally, these patients and their families often feel like ghosts to Menia and her organization as they are forced to seek treatment abroad.
Menia shared with Megan and Helene her excitement as she sees the potential for significant contributions by Karkinaki, including the translation and dissemination of KTG’s awareness materials to Greek pediatricians and pediatric ophthalmologists. She also expressed her desire to collaborate with the Greek Minister of Health to launch a national campaign to raise RB awareness.
Dr. Maria Pefkianaki, Director of Ocular Oncology Center Adult & Pediatric in Athens and President of the upcoming EURBG & Ocular Oncology Symposium (to which Helene Dameris will be traveling to in early June), shared her vision for RB treatment in Greece. Currently, Greek children diagnosed with RB are sent abroad for treatment, which creates additional emotional and financial burdens for families. Dr. Pefkianaki emphasized the need for a shift in mentality among locals, who have traditionally referred patients abroad as till now no retinoblastoma center was available in Greece.
Her efforts have already led to a significant decrease in adult ocular melanoma cases being treated abroad, demonstrating the potential for similar success with Retinoblastoma cases.
Menia was eager for Kostas and Eleni Skoularikas, parents of eight-year-old Marios, a retinoblastoma survivor, to share their distressing yet inspiring journey. When Eleni and Kostas first found their diagnosis, no one in their circle knew about retinoblastoma (RB). Eleni had noticed a glow in Marios’ eye while changing his diapers. His blue eyes made her think it was just a reflection, but a Facebook post about the glow in photographs made her suspect RB. At the hospital, despite initial skepticism from the doctors, an MRI revealed that Marios had RB in his eye, not a brain tumor. Eleni’s intuition, based on the American mother’s story she had read, was proven correct. Despite initially being dismissed by local doctors, Eleni’s persistence, fueled by information from social media, led to the correct diagnosis.
The family faced immense challenges, traveling frequently to Italy (Sienna) and later to Switzerland for Marios to be treated by Dr. Francis Munier. His care included systemic chemotherapy, thermotherapy, intra arterial chemotherapy, cryotherapy, and plaque therapy. Marios, now 8 years old, underwent a systemic chemotherapy and an autologous bone marrow transplant after the retinoblastoma metastasized to his leg (tribia) when he was 6 years old. His parents faced a difficult decision regarding his quality of life, nearly opting to amputate his leg. However, thanks to the efforts of pediatric oncologist Dr. Antonis Kattamis in Greece, they were able to save his leg.
Eleni highlighted the importance of having a comprehensive, multidisciplinary approach to RB treatment, combining local and international expertise to ensure the best outcomes for patients.
This conversation underscored the critical need for a robust support network for RB families in Greece. Menia’s organization, Karkinaki, is poised to play a vital role in this effort by launching awareness campaigns and providing educational resources to parents and medical professionals. Dr. Maria Pefkianaki’s ongoing advocacy for local treatment options is also crucial in reducing the need for families to seek care abroad.
Moreover, the experiences of families like the Skoularikas demonstrate the importance of early diagnosis and the invaluable support provided by organizations like KTG. By sharing their stories and collaborating across borders, these advocates aim to improve the diagnosis, treatment, and support for all families affected by RB.
The combined efforts of these dedicated individuals highlight the power of community and collaboration in the fight against retinoblastoma. Their work not only provides hope for affected families but also sets a foundation for a future where local treatment and comprehensive care are accessible to all.
