In the quiet yet bustling heart of Nnobi, a semi-urban Igbo community in Anambra State, Nigeria, my journey through academia began under the gentle guidance of my father. Though he was a busy civil servant, he ensured that trusted community members, like “Aunty Nurse,” cared for me in his absence. It was there, in the fatigued corridors of the local health center, that I first encountered the stark realities of neglected diseases. As I sat with Aunty Nurse after school, I witnessed the toll of illnesses ranging from okpo, helminth infections to diabetic leg ulcers, on our community. Her diligence and patience as she tended to our people, teaching them how to care for themselves amidst under-facilitated conditions, left an indelible mark on my young mind.This upbringing, steeped in the struggles of my community, laid the foundation for my academic pursuits. With the support of my mentor and supervisor, Dr. Ogechukwu Aribodor, I embarked on a journey that was as much a service to my community as it was an academic pursuit. Recognizing the prevalence and impact of neglected diseases like schistosomiasis in neighboring communities, I chose to focus on this particular parasitic infection due to its significant burden on public health and its relevance to the region. Though schistosomiasis is not endemic in my community, the neglect and lack of resources mirrored those of other communities in Anaocha LGA, Anambra State.Urogenital schistosomiasis and Female Genital Schistosomiasis (FGS) are insidious parasitic infections caused by the blood fluke Schistosoma haematobium. These diseases are intricately linked to the freshwater bodies that serve as both a source of livelihood and a spiritual connection for Igbo communities. As individuals engage in daily activities like washing vegetables or bathing in these waters, they unknowingly expose themselves to the larvae of the parasite, perpetuating the cycle of infection.Urogenital schistosomiasis primarily targets the urinary tract, inflicting symptoms such as hematuria (blood in the urine) and bladder dysfunction. On the other hand, FGS manifests when the parasite infiltrates the female reproductive system, resulting in debilitating symptoms such as genital lesions, pain during intercourse, and even infertility. These conditions not only pose physical challenges but also exact a heavy toll on the mental and emotional well-being of affected individuals.For Igbo communities, the freshwater bodies hold profound significance beyond their practical utility. They are revered as sources of sustenance, sources of spiritual cleansing, and sites for communal gatherings and rituals. However, this deep connection inadvertently exposes community members, particularly women and children, to the risk of schistosomiasis transmission.Yet, despite the prevalence of these infections, there exists a pervasive lack of awareness and resources for prevention and treatment within these communities. Especially because the existence of control measures target school children in primary schools, and therefore neglects adolescents in secondary schools who are significant reservoirs of infection.With the guidance of Dr. Aribodor, and through collaborative efforts with the state and federal Ministry of Health, the State Post Primary School Commission, and our team of dedicated researchers and supervisors, we embarked on a journey to identify endemic communities in Anaocha LGA. The warmth and hospitality extended to us by the principals, students, and community members during our advocacy visits were truly unforgettable. One particular story that resonated deeply was from Community Secondary School Adazi Nnukwu. Here, we found a school with no access roads, where students who worked as bricklayers as a means to fund their education volunteered to renovate the dilapidated principal’s office. Despite their hardships, their warmth and kindness towards our team during advocacy and in the course of the research left an indelible mark on our hearts.Similarly, Union Secondary School Agulu stood as a testament to resilience, with students forced to study without electricity, running water, or even a secure perimeter fence. Yet, their brilliance, intuition, and eagerness to learn were unparalleled. Most importantly I was overwhelmed by the support and involvement of community members from traditional rulers to town unions and social groups who were invested in the lives of their children. Indeed, the igbo philosophy of igwe bu ike, a strength in numbers which is the watchword of engagement, holds water. It goes further to show how impactful intervention programmes can be if the focus shifts from a target population to community-based interventions. I would like to add that the courses on informed consent and ICH good clinical practice that I went through on The Global Health Network's e-learning platform, provided crucial insights and sharpened my expertise and perspective as a health researcher. These experiences, inspired by my father’s advice to tell the story of our people, compelled me to find a way to merge academia with creative storytelling.While this posed a dilemma initially, Dr. Aribodor guided me towards courses and research initiatives like TDR’s storytelling in healthcare delivery. This guidance shaped our mixed methods approach, where ethnographic interviews allowed participants to share their stories authentically. However, challenges such as the cost-effectiveness and unavailability of colposcopy examinations as well as poorly equipped primary health centers, underscored the urgent need to strengthen our healthcare systems. In this regard, I express deep gratitude to Dr. Onwusulu from the Department of Obstetrics and Gynaecology at Nnamdi Azikiwe University, Awka. His generosity in providing his private equipment for our research, alongside his care and patience, was instrumental in our endeavours.In conclusion, our research findings not only highlight the urgent need for action against neglected diseases but also shed light on the devastating impact of Female Genital Schistosomiasis (FGS) on young girls within our communities. The consequences of this neglected disease extend far beyond physical symptoms, to its social and mental impact. Sadly, the lack of awareness surrounding FGS exacerbates these challenges, leaving many young girls to suffer in silence.Despite these adversities, it is awe-inspiring to witness the resilience and courage of those affected by neglected diseases. Many of our study participants, despite living with the neglect caused by these diseases, have achieved immense successes in their qualifying exams and continue to strive for excellence while being acutely conscious of their health. Their strength and determination serve as a testament to the human spirit’s capacity to overcome adversity.I extend my deepest admiration to these individuals for their unwavering perseverance and resilience in the face of immense challenges. Their stories serve as a poignant reminder of the importance of raising awareness and mobilizing resources to combat neglect and provide support to those in need.I extend my heartfelt thanks to every member of our dedicated team, from the passionate undergraduate students to the exemplary lab technicians, Mr. Ifeanyi Obika and Mr. Collins Udeh. Special recognition goes to my colleague Ms. Jacob Eunice and the team of brilliant young women for their unwavering dedication and perseverance throughout our journey.To my esteemed supervisors, Dr. O. B. Aribodor, Dr. I. M. Ikeh, and Dr. U. C. Ngenegbo, I am profoundly grateful for your meticulous guidance and expertise. I also extend my appreciation to every member of the communities and schools we visited, whose stories continue to inspire and motivate us.My deepest gratitude goes to my family for their unwavering support. I also extend my gratitude to my community, ancestors, and to the divine for the values, dreams, and grace that have guided me on this journey.As we reflect on our research journey, it is clear that collective action is needed to address the prevalence of neglected diseases and support those affected. I invite you to delve deeper into our findings by reading the full journal article []. Together, let us continue to strive towards a healthier and more equitable future for all, where no one is left behind due to neglect or lack of awareness.


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