Persons with Albinism (PWA), partially or completely lack the capacity to produce melanin, a photo protective pigment in the skin, eyes and hair. Melanin protects one’s skin against the suns ultraviolet radiation. The deficiency of melanin in PWA, leaves the skin vulnerable to sun damage and increases the risk of developing skin cancer. In the African context where albinism is misunderstood, PWA are subjected to dehumanisation due to myths and superstitions surrounding the condition and are likely to receive no education and therefore make a living through unskilled, low paid jobs.
With high vulnerability to sun damage, many PWA in Africa die from skin cancer. In Tanzania for example, studies have shown that as few as 1 in 10 PWA survive skin cancer and live over the age of 30. With adequate sun protection methods (sunscreen, hats with wide brims, long sleeved clothing, regular medical check-ups, education and sensitisation on sun protection), skin cancer deaths in PWA are 100 percent avoidable.
Across the African continent the provision of sunscreen is very poor. Sunscreen is not readily available and is at times donated from abroad. It often contains ingredients that irritate the skin and is out of date not strong enough.
A one of a kind initiative, “Kilisun Care” is a non-profit organisation which provides tailored sun protection for PWA in sub-Saharan Africa. Kilisun Care is behind the development of “Kilimanjaro Suncare” sun cream, a sunscreen which is currently produced at the Regional Dermatology Training Centre in Moshi Tanzania. It is the first of its kind as it is specially designed for the prevention of skin cancer in PWA. Kilimanjaro Suncare sunscreen is a water-in-oil emulsion with a high sun protection factor (SPF) of over 30. The product is distributed in remote areas through mobile clinics, health facilities and schools. Kilisun Care in partnership with the RDTC provides education and sensitisation to users and their families, recruiting staff with albinism in an effort to empower PWA to actively participate and lead the distribution of the product.
The success of Kilisun is evident through the positive impact it has had on the lives of many. So far over 4000 PWA, 52% of which are children receive Kilisun services in Tanzania. Among these PWA, there has been 75% decrease in sunburn and precancerous lesions. 96% of these beneficiaries recommend Kilisun services and 30% of the local staff working on production have albinism. Through this incredible social impact, Kilisun is clearly not only changing the lives of PWA through the provision of sunscreen and education on the importance of sun protection but is also creating job opportunities for individuals who experience stigma in society.
This year, Kilisun Care plans to pilot its programme in Malawi and Rwanda, launch an improved sunscreen formula in Malawi, Rwanda and Tanzania, conduct a feasibility study in Fiji and launch a 4-year impact study. In 2019, Kilisun aims to present pilot studies to UN agencies and other strategic partners, conduct assessment exercises in two more countries and build a production unit in Malawi. By 2020, the aim is to start a sunscreen production unit in Malawi and launch the Kilisun package at national level in Malawi. By then the organization expects that 10, 000 PWA receive Kilisun services in 3 sub- Saharan African countries.
The views and opinions expressed in this article are those of the author and do not necessarily reflect the views of The Best of Africa.
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