<blockquote>“I went through three months of pain, fear, and confusion only to realize it was something our health system never prepared me for.” Beryl Adenyo, Youth Health Champion.</blockquote>In the heart of Homabay County, where lush landscapes meet the challenges of rural life, rivers serve as a lifeline, providing water for drinking, cooking, and daily survival. Still, sometimes these same rivers carry silent threats. For Beryl Adenyo, a passionate youth health advocate, that reality hit close to home in a way she never expected.In 2023, Beryl made a life-changing move from a semi-urban environment to a small rural village, where she settled with her fiancé. Adjusting to a new lifestyle came with the natural rhythm of the community, drawing water from the nearby river, sharing local customs, and embracing the slower pace of rural living. But not long after, her health began to deteriorate.<h3>When Illness Creeps In Silently</h3>At first, the symptoms were vague fatigue, body aches, fever, and nausea. Like many in her region, she assumed it was malaria, an all-too-common affliction. She did what anyone else would do: visited local clinics and got tested, but the results were baffling, repeated negative malaria tests. Other possibilities were explored: pregnancy tests, HIV tests, and STI screenings, but all returned negative. Doctors prescribed painkillers and antibiotics, yet her condition worsened. Soon, more alarming symptoms emerged: burning pain while urinating, bloody urine, intense abdominal cramping, and chronic fatigue that made simple daily activities unbearable.<h3>Misunderstood. Misdiagnosed. Isolated.</h3><blockquote>“I was constantly questioned about my condition, some people thought I was hiding a pregnancy, others believed I was bewitched,” Beryl shares. “Even I began to question what was happening to me.”</blockquote>Despite her active role as a youth advocate in sexual and reproductive health, Beryl had never encountered discussions about <a target="_self" rel="noopener noreferrer nofollow" class="text-blue-600 underline hover:text-blue-800 pSsqrsDflyyTGZvsdjPbvrjtYPhWNBHDvgA " href="https://www.who.int/health-topics/schistosomiasis">bilharzia,</a> a neglected tropical disease (NTD) that affects millions globally, especially in poor and remote communities. Neither her formal training nor her interactions with medical professionals had prepared her for the reality that her symptoms could be caused by a parasitic infection contracted from river water, something so common in her environment yet so rarely spoken about in health discourse.A Turning Point Through Community ResearchAfter three months of suffering in silence, an unexpected opportunity arrived. A friend and fellow advocate informed her of a community-based research and screening initiative by <a target="_self" rel="noopener noreferrer nofollow" class="text-blue-600 underline hover:text-blue-800 pSsqrsDflyyTGZvsdjPbvrjtYPhWNBHDvgA " href="https://www.kemri.go.ke/">KEMRI</a>, focused specifically on schistosomiasis. Though skeptical, Beryl decided to attend. It was a decision that would finally put a name to her pain.At the session, she heard something that shook her to the core: a health expert listing symptoms that matched hers perfectly. Urine tests, stool samples, and an ultrasound were followed. The diagnosis? <a target="_self" rel="noopener noreferrer nofollow" class="text-blue-600 underline hover:text-blue-800 pSsqrsDflyyTGZvsdjPbvrjtYPhWNBHDvgA " href="https://www.who.int/health-topics/schistosomiasis">Schistosomiasis a </a>waterborne parasitic disease that she had unknowingly contracted.For Beryl, it was a bittersweet moment. Relief swept over her as she finally had an answer, but so did heartbreak.<blockquote>“If someone had tested for this earlier, I wouldn’t have gone through so much pain,” she reflected.</blockquote><h3>Beryl’s Story is a Wake-Up Call</h3>Beryl’s journey highlights a painful truth: that neglected tropical diseases remain neglected not only in funding and policy but also in awareness, diagnosis, and conversation. In many communities like hers, NTDs are either unknown or misunderstood, leading to misdiagnosis, delayed treatment, stigma, and preventable suffering.Her experience reveals the deeper systemic gaps:<ul><li>A lack of training for health workers in recognizing NTDs</li><li>Limited access to proper diagnostic tools in rural clinics</li><li>Cultural taboos around symptoms associated with NTDs</li><li>The overwhelming focus on diseases like malaria, HIV, and tuberculosis, while millions quietly suffer from illnesses like schistosomiasis, soil-transmitted helminths, or lymphatic filariasis</li></ul><h3>The Call to Action</h3>Beryl’s voice is one among many, but it carries a powerful message: we must do better. Her story is about being failed by a system that didn’t know where to look and being failed by silence when speaking out could have saved others. At GANE, we believe in the power of frontline voices to shape policy, education, and community action. We call on all stakeholders—governments, healthcare workers, researchers, and community leaders—to take the following steps:<ul><li>Raise awareness about schistosomiasis and other NTDs in both medical and community settings.</li><li>Collaborate with organizations like <a target="_self" rel="noopener noreferrer nofollow" class="text-blue-600 underline hover:text-blue-800 pSsqrsDflyyTGZvsdjPbvrjtYPhWNBHDvgA " href="https://www.kemri.go.ke/">KEMRI to scale</a> up local screenings and health education.</li><li>Train frontline health workers to detect and treat NTDs effectively</li><li>Integrate NTD education into sexual and reproductive health programs and school curricula.</li><li>Break the silence around symptoms often stigmatized or misinterpreted, especially among women and girls.</li></ul><h3>Towards a Future Free of NTDs</h3><pre><code>As we aim for the elimination of NTDs by 2030, Beryl’s story is a stark reminder that data and diagnostics must be accompanied by empathy and action. We cannot fight what we do not understand, and we cannot cure what we refuse to see.</code></pre>Let us start by listening to the voices on the front line. Let us ensure that no one else goes through what Beryl endured, not because we lacked the tools, but because we failed to care enough.Listen to Beryl's story here:<a target="_self" rel="noopener noreferrer nofollow" class="text-blue-600 underline hover:text-blue-800 pSsqrsDflyyTGZvsdjPbvrjtYPhWNBHDvgA " href="https://drive.google.com/file/d/11bILe9faxN4ZwpYHP_QcdSoVEXXmH--x/view?usp=sharing">BERYL ADENYO</a><hr>Have a Story to Share? Are you a health worker in the NTDs space or someone with lived experience of an NTD? We want to hear from you. Share your story with us at [ganekenya@gmail.com]. or tag us on social media using #NTDstoriesfromthefrontlineTogether, we can end the neglect, one story at a time.

Stories from the Frontline: Beryl Adenyo’s Journey with Bilharzia

Kenya

Africa

The Global Alliance for NTDs Elimination (GANE) is a registered youth-led NGO founded in September 2024 committed to eliminating neglected tropical diseases (NTDs) through strong social media advocacy, the integration of Water, Sanitation, and Hygiene (WASH) and the One Health approach, policy advocacy, and community engagement supported by innovative technologies.
Our work is centered on meaningful community engagement, strategic advocacy, and policy reform to achieve sustainable and impactful health outcomes. By working closely with both communities and policymakers, we seek to bridge the gaps between the health, environmental, and infrastructure sectors, creating a holistic and coordinated approach to tackling NTDs and promoting long-term health improvements.


NOEL AWA

KELVIN WARURI NYAGA

Global Alliance for NTDs Elimination-Kenya(GANE-Ke)

As part of our program to reach university and college students, we held our first project at Kenyatta University, delivering a comprehensive lecture to public health students at Kenyatta University titled "Youth Leadership In Action: Raising Awareness On Neglected Tropical Diseases."
Grounded in evidence and drawn from Kenya’s own NTD landscape, the session explored:

The burden of NTDs globally, in Africa, and across Kenya.
Kenya’s priority NTDs, emerging outbreaks, and climate-driven shifts in disease patterns.
The intersections between WASH, vector control, migration, and health system resilience.
The critical leadership roles young people can play in digital advocacy, community mobilization, surveillance, and policy engagement.

Kenyatta University Public lecture

Raising Awareness On Neglected Tropical Diseases Among  University Students”.

Our Hand Hygiene Campaign was implemented to highlight the importance of handwashing as a simple but powerful tool in preventing infectious diseases and neglected tropical diseases (NTDs). During Global Handwashing Day at Chewele Sub-County Hospital in Bungoma County, we engaged patients, caregivers, and healthcare workers through brief educational talks and practical demonstrations on proper handwashing with soap and clean water.

The activity emphasized key moments for hand hygiene, such as before eating and after using the toilet, and linked good hygiene practices to the prevention of NTDs and other common infections. The campaign strengthened awareness on prevention, promoted healthy behavior change, and reinforced hand hygiene as a cost-effective and sustainable public health intervention.


Creating awareness on hand hygiene

hand hygiene campaign as a key step in preventing infectious and neglected tropical diseases

We used social media as a powerful digital advocacy tool to highlight the prevalence, transmission, symptoms, prevention, and management of visceral leishmaniasis (VL). This initiative was part of our broader project aimed at leveraging digital platforms to enlighten and engage the global community on Neglected Tropical Diseases (NTDs). Through informative posts, visual content, and educational campaigns, we sought to increase awareness, correct misconceptions, and promote early detection and treatment of NTDs. By using digital advocacy, we are able to reach diverse audiences beyond geographical boundaries, amplify the voices of affected communities, and contribute to global conversations on NTDs, ultimately supporting efforts toward prevention, control, and elimination.

VISCERAL LESHMANIASIS

Digital advocacy on visceral leshmaniasis

GANE was honored to contribute to a side event on the impact of youth in tackling Neglected Tropical Diseases (NTDs) sharing insights on how young people are driving change in their communities, leading awareness campaigns, and bringing innovation to the fight against diseases that have been neglected for too long. During this session we  also lobbyed the european countries to commit their support towards their support for NTD advoacy

NTD SESSION AT ECTMIH

As we counted down to #WorldNTDDay, we built momentum through the #NTDTriviaChallenge, a daily knowledge series designed to inform, engage, and inspire action
From 16th to 28th January, we shared one trivia question each day to raise awareness on NTDs, challenge misconceptions, and spark meaningful conversations.
In line with the 2026 theme Unite. Act. Eliminate., the challenge demonstrated how knowledge sharing is a powerful step toward #EndingNTDs.
We also recognized the dedication of our community, with the top three participants receiving certificates of recognition.

Global Alliance for NTDs Elimination-Kenya(GANE-Ke)

About

Vision

Mission

Location

Challenges Addressed