Vitiligo Support and Awareness Foundation (VITSAF)

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Vitiligo Support and Awareness Foundation (VITSAF)

Project Stage:
$1,000 - $10,000
Project Summary
Elevator Pitch

Concise Summary: Help us pitch this solution! Provide an explanation within 3-4 short sentences.

Afflicted with a disease that has been neglected throughout much of Africa, Ogo is establishing a blueprint for how to address that disease as well as others that suffer from a similar lack of attention.

About Project

Problem: What problem is this project trying to address?

Vitiligo is a disease that is completely unknown by many and greatly misunderstood by others in Nigeria and across West Africa. Large numbers of the Nigerian population have never come into contact with disease, for example, and those who have, often attribute it to mythical, negative causes, like punishment for past wrongs. And unlike albinism, which afflicts one from birth, vitiligo often lends itself to an increased degree of mysticism because pigmentation loss can happen suddenly, shocking and confusing those who have little scientific tools with which to understand what is happening. This complete lack of awareness and association with non-medical causes is prevalent within the general public, as well as amongst many with vitiligo themselves. The result is that those with vitiligo suffer from an immensely decreased quality of life, including poor body image, extreme depression, isolation, stigma, and discrimination. They deal with stares, unfriendly comments, rejection, segregation, and even threats. Moreover, because vitiligo is not often linked to the medical realm, those with vitiligo are often unaware of the medical implications of the disease. They can be unaware that they are exposing themselves to the risk of skin cancer in the newly de-pigmented parts of their body when they spend time in the sun, for example. They are even less aware of the series of other autoimmune disorders that persons living with vitiligo commonly develop, including pernicious anaemia, diabetes 1, alopecia areata, hyperthyroidism, and adrenocortical insufficiency. There is certainly a cultural element that helps explain this reality, including the existence of traditional belief systems that are not updating to understand relatively new issues as they arise in society. Compounding this is the fact that the medical field in Nigeria has not dedicated any resources to demystifying the disease. The healthcare system is in fact quite behind in understanding and addressing the disease so much so that doctors can consistently be found misdiagnosing patients, and often when the diagnosis is accurate, the medications and treatments prescribed are outdated or incomplete. Several factors contribute to this. The reality is the Nigerian healthcare system is heavily overburdened. Additionally, few incentives exist to focus attention on the development and implementation of accurate treatment for diseases with relatively small patient populations. The 1 - 2 percent of West Africans who are thought to suffer from vitligo, for example, is dwarfed by the numbers currently being affected by other diseases such as HIV and malaria. Furthermore, the necessary psycho-social support network that is so key in treating vitiligo patients is barely understood and even less resourced in Nigeria, and many other emerging economies. The same can be said for a pronounced culture of patients’ rights that would also help combat the misdiagnosis and mistreatment of vitiligo patients in hospitals.

Solution: What is the proposed solution? Please be specific!

Ogo is spearheading the first effort to tackle the challenges surrounding vitiligo in Nigeria, Africa’s most populous country. She is doing so along three fronts. First, she is building awareness, acceptance, and agency around a disease that is consistently misunderstood and misdiagnosed amongst the general public as well as amongst those who suffer from vitiligo themselves. Second, she is targeting the health sector, in particular, gently molding it into one that is more responsive and tuned into the needs and treatment of vitiligo patients. Third, Ogo is increasing the access to, and volume and variety of products available for vitiligo patients to manage their own treatment on their own terms between the necessary doctors’ visits. Ogo has her eye on expanding this work beyond Nigeria, with support groups already launched in Kenya and South Africa. Also, recognizing that there are likely a host of other skin diseases and skin/body imperfections like vitiligo that are currently poorly understood and inadequately addressed across Nigeria and much of Africa, Ogo has started to incorporate this larger cluster into her work.