Quality of Life and People with Albinism in Tanzania: More than Only A Loss of Pigment

Samson Kimaiyo Kiprono, Lucumay Nanyori Joseph, Bernard Naafs and Baraka Michael Chaula
Publication year: 

Background: Occulocutaneous albinism type II (OCA2) is the most common type of albinism in Sub- Saharan Africa. People with albinism have poor vision and they are highly susceptible to skin cancers. The lack of understanding of the cause of albinism as led to numerous superstitions that limit their social acceptance and integration into their communities. The aim of this study was to assess the quality of life of people with albinism at the time of albino killings in Tanzania.

Methods: This was a cross-sectional study conducted in 14 Regional Dermatology Training Center outreach clinics in Northern Tanzania. Dermatology Life quality Index (DLQI) questionnaire was used to obtain DLQI scores. A semi-structured questionnaire was used to collect data on education, work, relationships and sun protection.

Results: A total of 149 people with albinism were recruited with a mean age of 32.2 years. The mean DLQI score was 13.1 (95% CI=12.4 - 13.9). Half (49.6%) of the participants were discriminated at school. A total of 138 participants were eligible for marriage, however 52.2% were still single. Albinism was reported as the reason for separation or divorce in 50% (9) of those who were separated or divorced. Discrimination during employment was reported by 46.6% (31) of those who are unemployed.

Conclusion: People with albinism have very poor quality of life. They face discrimination and challenges in integrating into the community.