Luke Kanyang'areng: The nurse who turned his pain into purpose

Nurse in Charge Luke Kanyang'areng' checks up on kala-azar patient Chepiralima Lomudang at the Kacheliba Sub-County Hospital grounds. {Mercy Mumo/DNDi} Luke Kanyang'areng, a nurse at Kanyarakwat Health Center in West Pokot County, walks steadily to the podium at the African Health Agenda International Conference (AHAIC) in Rwanda, greeted by cheers from health experts and delegates. His story is one of resilience and inspiration. Growing up in a community where leishmaniasis was common, he never imagined that one day he would be at the forefront, educating African nations on how to prevent, manage, and treat the very disease that nearly took his life. At just 14, Luke fell ill with fever, loss of appetite, weight loss and persistent headaches. He was taken to the nearest dispensary and diagnosed with malaria, but his symptoms did not improve. Referred to Kachiliba Health Center, he was once again misdiagnosed with malaria. Without a clear diagnosis, his condition worsened and he began to lose hope. Desperate for an answer, his parents started to believe he was under a spell. "Waking up unwell and going to bed in pain was traumatising. I lost hope of ever recovering," Luke recalls. "My parents believed I had been bewitched." One day, well-wishers visited his home and took him to Kitale, where spleen tests confirmed he had leishmaniasis. Leishmaniasis is a disease caused by an intracellular protozoa parasite transmitted by the bite of a female sandfly. The struggle to get the right diagnosis and treatment inspired him to pursue a nursing course to save lives. "My experience with leishmaniasis gave me deep empathy for patients. I understand the pain it brings, and that makes me a better nurse," he says. While still in nursing school, he witnessed the heartbreaking reality of patients arriving at hospitals too late for treatment. Luke recalls a woman at Ortum Hospital with advanced leishmaniasis and acute anaemia. Tests revealed kidney failure, but before she could be referred to MTRH, she died. "Her death was painful. Many lives are lost due to late diagnosis. That's why I raise awareness for early detection to save lives," he says. Today, Luke is dedicated to educating communities in West Pokot and other parts of Kenya about leishmaniasis. "Ignorance remains high among locals. Many don't understand how the disease spreads or how to protect themselves-some even believe it's a curse," he observes. "This is why I wake up every day to educate communities and Community Health Promoters (CHPs) about the disease, its transmission, and prevention," he adds. During training, Luke advises staying indoors during peak sandfly biting hours, improving housing to prevent breeding, and ensuring early diagnosis. He also urges government action to enhance healthcare in underserved remote areas. "Pastoral communities in endemic regions migrate due to water shortages. African governments should provide water and establish hospitals for early diagnosis," he notes. Dr Wycliffe Omondi, Assistant Director of Medical Parasitology and Head of Vector-Borne Tropical Diseases at the Ministry of Health, explains that leishmaniasis is a parasitic disease classified under Neglected Tropical Diseases (NTDs). It spreads through sandfly bites, which transmit the parasite from infected individuals. According to Dr Omondi, apart from Kenya, the disease is endemic in countries across South America, Asia and Africa. In Africa, the most affected regions are in Sub-Saharan Africa, particularly East Africa, including Kenya, Uganda, South Sudan, Sudan, Ethiopia, and Chad. He explains that Leishmaniasis has three main forms: visceral (Kala-azar), cutaneous, and post-kala-azar dermal leishmaniasis. Visceral leishmaniasis is the most severe, affecting the spleen, liver, and bone marrow. Cutaneous leishmaniasis causes disfiguring skin sores, mainly on the face and limbs. Post-kala-azar dermal leishmaniasis, common in Eastern Africa, develops months after visceral leishmaniasis treatment but is non-lethal. "In visceral leishmaniasis, the parasite multiplies in the spleen, causing prolonged fever, severe headaches, an enlarged spleen, swollen abdomen, weight loss, and anaemia. Cutaneous leishmaniasis presents with skin lesions and ulcers, often on the face," says the ministry official. Dr Cherinet Adera, Senior Market Access Manager at the Drugs for Neglected Diseases Initiative (DNDi), notes that Kenya has a high burden of visceral leishmaniasis. He emphasises on the first-line treatment in Eastern Africa combines Sodium Stibogluconate and Paromomycin, both given as injections over 17 days, requiring hospitalisation. "These drugs are painful, and Sodium Stibogluconate can cause severe, even life-threatening toxicities," says Dr Adera. DNDi is actively developing safer, more effective, and user-friendly treatments for visceral leishmaniasis. A clinical trial in Ethiopia, Sudan, Kenya, and Uganda evaluated an alternative to the current first-line treatment. It found that combining Sodium Stibogluconate (SSG) with Miltefosine, an oral drug, is equally effective. "This new regimen shortens hospitalization to 14 days, replaces painful injections with oral treatment, and eliminates SSG's toxic effects," says Adera. WHO is currently reviewing the study's findings for treatment recommendations. Among diagnostic methods include antigen-based tests like the RK39 test, recommended by WHO, but it only indicates exposure, not active infection. Molecular tests are also used but are unavailable in most facilities. Doctors may also rely on clinical observation, especially when a patient has a fever lasting over two weeks and malaria is ruled out. Misdiagnosis is also common, as Leishmaniasis presents symptoms similar to malaria. Additionally, delayed diagnosis and treatment are worsened by a lack of trained health workers and proper equipment. "Diagnosis is challenging, with the gold standard being spleen or bone marrow aspiration, which requires specialized expertise," he says. Even with availability of treatment, Omondi admits that many endemic counties lack proper treatment facilities, forcing patients to travel long distances for care. He warns that if untreated, leishmaniasis is fatal. "It is a chronic disease with a progressive nature. We report about 1,000 cases annually, but during outbreaks, fatalities rise significantly," Dr Omondi warns. In Kenya, leishmaniasis was historically confined to eight arid and semi-arid counties, including Turkana, West Pokot, Isiolo, Mandera, Marsabit, Wajir, and Garissa. However, climate change has expanded its reach to Kitui, Kajiado, Tharaka Nithi, and parts of Nakuru, with at least 11 counties now experiencing transmission. "Despite its impact, the disease remains neglected in Kenya, disproportionately affecting poor communities with little investment in research and medical products," says Dr Omondi. He adds, "Pharmaceutical companies see little return on investment, limiting progress in diagnostics and treatment." Preventing the disease involves controlling sandfly bites, but many measures are impractical. Spraying is expensive due to widespread infestations, and the hot climate in affected areas makes wearing long-sleeved clothing difficult. "We advise wearing long-sleeved clothing, but in arid areas with high temperatures, this cannot be actualised," says Omondi. He adds that climate change is also altering sandfly behavior. "They used to breed in anthills, but now they are moving into household cracks and manyattas, increasing the risk of infection." Spraying chemicals could help, but coverage is limited due to high costs and vast affected areas.

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Luke Kanyang'areng: The nurse who turned his pain into purpose

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