Supporting Persons With Albinism

The Sierra Leone Association for Persons with Albinism is comprised of committed young people with albinism who want to raise awareness of their experiences of discrimination and stigma, as well as generate support for the specific health issues faced by people with albinism in Sierra Leone. There are multiple local beliefs/myths surrounding the condition and very little support for the practical health problems faced by those with albinism. Over 80% of people with albinism in Sierra Leone will die an early death from skin cancer.

There is no agreed figure for the number of Persons With Albinism in the country but estimates vary from 1500 to 3000. Many people are hidden, children are frequently abandoned but it is difficult to get accurate figures from national censuses.

The Association seeks to address many of the themes that we see in our ongoing epilepsy project work, especially around the lack of local health care provision to support the specific needs of the community and the stigma that surrounds the condition.

Skin care is a key issue. Protective sun cream is expensive in Sierra Leone and out of reach of most people (costing between £10 and £15 a bottle locally; the average primary school teacher’s salary is £40 a month). Protection from the sun saves lives and needs to start from an early age.

Most Persons With Albinism have vision problems as a result of the irregular growth of the retina, the light-sensitive tissue at the back of the eye, and irregular nerve connections and patterns.  Many complex eye problems are common in Persons With Albinism, including extreme sensitivity to bright lights and glare (photophobia).  Quality sunglasses and tinted lenses can be very helpful, and regular input from eye specialists such as ophthalmologists can also play a key role in supporting and maintaining eye care.

Building on the support that we have offered this year to people with albinism to access surgery for skin cancer and the provision of prescribed cream which removes pre-cancerous cells, MASL is now exploring ways to work with health worker colleagues in Sierra Leone to develop capacity in the key areas of dermatology and eye care.  

Alongside this planned support for clinical capacity, we will continue to provide quality SPF 50 sun cream and sunglasses to the Sierra Leone Association for Persons with Albinism, for distribution free of charge to members across the country. We will also support the advocacy work of the Association which raises awareness, challenges disabling stigma and works for the full realisation of the rights of Persons With Albinism in health care provision, education and in the community.