Living with albinism in an African community: exploring the challenges of persons with albinism in Lilongwe District, Malawi.

BACKGROUND

Albinism is a genetic condition caused by a deficit in the production of the pigment called melanin, which protects the skin against ultraviolet light and provides the skin with its color production. The condition may predispose persons with albinism (PWAs) to lifelong physical and health problems, such as visual impairment and ultra-violet induced skin damage. Due to this condition, we explored the challenges faced by persons living with albinism as they socialize in Lilongwe District, Malawi.

METHOD

The study adopted an interpretative phenomenological approach and included 30 participants comprising 13 females and 14 males with albinism and three key informants from Association of People with Albinism in the Lilongwe district in Malawi. Data were collected through in-depth interviews and focus group discussions. Van Manen's (2014) six steps of phenomenological analysis was used to analyze all data.

RESULTS

People with albinism face a variety of problems, the most common of which are financial constraints, health complications due to a lack of adequate medical care, a lack of community support leading to stigma and discrimination, and superstitious beliefs.

CONCLUSIONS

People with albinism suffer socially as a result of misconceptions, behaviours, social isolation, labelling, and beliefs that are negatively correlated with their disorder. PWAs face these problems as a result of public misunderstanding about albinism.