Introduction

In Togo, as in many African countries, people with albinism often live in the shadows. More than just a physical difference, albinism is a genetic condition that exposes individuals to serious health risks, social stigma, and a dire lack of protection. Yet, with greater understanding of this condition, change is possible. In March 2025, the African Center for Research in Epidemiology and Public Health (CARESP), in partnership with the National Association of Persons with Albinism in Togo (ANAT), published the first national mapping of people with albinism (PWA). According to the study, 1,521 individuals were identified, representing a national prevalence of 18.79 per 100,000 inhabitants, with 62.78% under the age of 25. The Plateaux region has the highest concentration. This article explores the daily challenges faced by people with albinism in Togo and provides essential insights to better understand and address this often-misunderstood condition.

Understanding Albinism: A Matter of Genetics

Albinism is caused by a genetic mutation that prevents the body from producing melanin the pigment that gives colour to skin, hair, and eyes. This absence of melanin makes the skin extremely sensitive to the sun and the eyes vulnerable to light. Importantly, carrier parents may show no visible signs of the condition. This is why albinism can occur in families with no known history.

Health Risks: A Silent Emergency

People with albinism face a range of health risks. In Togo, the tropical climate, limited access to specialized care, and widespread lack of awareness about the condition in some communities worsen these risks. Because they lack melanin, people with albinism have extremely sensitive skin, making them highly susceptible to UV radiation. The constant year-round sun exposure leads to frequent sunburns even in early childhood pre-cancerous skin lesions, and a high risk of skin cancer, often diagnosed at late stages. They also experience photophobia (light sensitivity), nystagmus (involuntary eye movements), and strabismus (eye misalignment), resulting in low visual acuity. These visual impairments hinder school learning and professional life, especially in the absence of proper eyeglasses or eye care. But the challenges are not only medical. People with albinism also face social and psychological obstacles. Beyond physical issues, individuals with albinism in Togo endure mockery and rejection at school and within their communities. Harmful beliefs often associate them with curses or mystical powers, leading to social isolation and lowered self-esteem. These factors can lead to depression and, especially among youth, school dropout. Until 2025, care for people with albinism was centralized in Lomé, making treatment inaccessible for many.

Pathways Toward Solutions

As of August 1, 2025, Togo adopted a national medical strategy for the care of people with albinism, through the DERMATOGO project. The project aims to provide permanent dermatological and surgical care across all regions, train teledermatology professionals to enable remote diagnosis, and integrate modules on albinism into health training schools. Ten surgical centers and 38 teledermatology centers have been established throughout the country. In addition, nationwide campaigns are being carried out to educate families and communities on the genetic causes of albinism, promote school and social inclusion of children with albinism, and most importantly, combat harmful myths and beliefs. Beyond government action, civil society organizations are distributing sun protection kits (including sunscreen, clothing, and sunglasses) in rural areas to reduce the risk of skin cancer.

Conclusion

Although albinism is a well-known genetic condition, it remains surrounded by ignorance, stigma, and neglect in Togo. Those living with it face serious daily health risks. Yet lasting change can only come if every Togolese and every African understands that this condition is not a curse, but a human reality that deserves respect, protection, and inclusion. As citizens, educators, health professionals, or policymakers, we all have a role to play in ensuring that people with albinism can live safely, with dignity, and in the full light of day.