Albinism: The Intersection between Health, Melanin, and Vision

In Albinism, Healthcare on May 10, 2014 at 4:32 pm

Global Health Africa blogger, Sophie Okolo, provides an overview of albinism in Africa. Her goal is to focus and raise awareness on the health issues affecting albinos.

Photo by Gustavo Lacerda

Photo by Gustavo Lacerda

My recent fascination with Lupita Nyongo, a 2014 Academy Award winner among other prestigious film awards, is nothing out of the ordinary. Some of us admire certain celebrities for their work especially when they tackle an issue that is of great importance. In 2009, Lupita wrote, directed, and produced the documentary In My Genes, about the treatment of Kenya’s albino population, which played at several film festivals and won first prize at the 2008 Five College Film Festival. While In My Genes delves into the prejudices that surround albinism, my goal is to focus and raise awareness on the health issues affecting albinos in Africa.

Albinism is a defect of melanin production that results in little or no color (pigment) in the skin, hair, and eyes. Growing up in Nigeria, I noticed a number of people with albinism but was oblivious to the many health challenges they faced as a result of their skin pigmentation. Like the people in Lupita’s documentary, they always had problems with vision (not correctable with eyeglasses) because albinism affects eyesight. With no melanin in the eyes to sieve light, people with albinism struggle to sieve light which leads to astigmatism, an optical defect caused by the abnormal patterns of nerve connections between the eye and the brain; and the struggle to see in bright light. In Kenya, people with albinism are grouped with the blind and the visually impaired although many people with albinism are legally blind.

Africa is the hottest continent on earth therefore people living with albinism are prone to skin cancer due to the sun’s harmful rays. Agnes Muthakye, the main protagonist of In My Genes, always covered the top half of her face to protect her skin from the sun’s harmful rays. Unlike other populations, the skin of an albino does not acquire a tan when exposed to sunlight. Instead, it remains light which poses a greater risk of skin cancer. In tropical countries like Kenya and Tanzania, those who do not use skin protection may develop life-threatening skin cancers which reduce their life spans considerably. Sunscreens are a much needed commodity in regions that have any number of people living with albinism. Unfortunately, the lack of sunscreens and availability of low quality sunscreens only worsen the health conditions of albinos especially since skin cancer is a leading cause of death among albinos.

Despite these issues, organizations such as the Albino Foundation (TAF) is doing great work to improve the health and social well-being of people with albinism (PWA) in Nigeria and the world. Among other ongoing programs and initiatives, TAF provides free treatment and rehabilitation to poor and indigent albinos who cannot afford the high cost of preventive skin care management and treatment. Also, the Regional Dermatology Training Center housed at Kilimanjaro Christian Medical Center (KCMC) became the first facility to produce a Tanzanian-made sunscreen. The low cost of manufacture allows the operation, which is supported by donations and supplied with raw materials by the chemical company BASF, to distribute sunscreen for free.

African societies need to prioritize the needs of people with albinism. In the United States, most people with albinism live normal life spans and have the same types of general medical problems as the rest of the population. Increasing the use of sunscreen lotions rated 20 SPF or higher, optical aids, sun hats and sun-protective clothing will improve the quality of life of people with albinism. Moreover, the continent needs to train and retain more optometrists or ophthalmologists with experience in low vision. Hospitals with specialization in dermatology and ophthalmic health should also be a goal for African societies. Ultimately, albinism is not preventable but quality of life can be improved for people with albinism especially if everyone does their part.


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