Albanism in Tanzania

Kristen Miller

Albinism is a genetic condition which affects 1/20,000 people in North America. However, in Tanzania, Africa, the incidence of the condition is much higher, with approximately 1/4000 people affected. People affected with albinism have very pale skin and hair due to a mutation in the gene producing melatonin. Melatonin is required to give our skin pigment, and is necessary to protect our bodies from the sun. Albinism has very severe complications associated with it. Characteristic eye impediments such as involuntary movements (nystagmus), macular underdevelopment, and blindness are common in affected individuals. Although these are impairing, the most harmful complication is skin cancer. Skin cancer results from a decrease in defence against the sun and an increase in sun damage. In Tanzania, the effect of the sun is more intense and harmful, resulting in a need for protection.

In Tanzania, there is also a negative social stigma associated with people with albinism. Affected individuals are being persecuted because of their different appearance; they are being executed by civilians, and their body parts are being sold to witch doctors for use in potions. The worst killings are occurring in rural areas, where residents are more superstitious, less educated and use local healers more often. In some areas, it is believed the body parts of people with albinism are magical and will bring riches to those who have potions made with those ingredients.

In what started as a project for one of our classes, a group of 6 first year human genetics students decided to do an outreach project speaking to high schools, elementary schools and peers about the occurrences in Tanzania. We wanted to educate people about the disorder and its associations, as well as how we can make a difference in the lives of affected individuals. We presented a 30 minute presentation to over 175 students and peers/colleagues which included information on the struggles of having albinism in Tanzania. The genetics of the condition were discussed with an emphasis on how we can contribute to their welfare. Prior to the presentation, we had decided we would like to collect donations of hats and sunglasses to send to affected people in Tanzania to help them protect themselves from the sun’s harmful impacts. There was an eager response from all groups presented to, and everyone was willing to participate in discussion and donation. In total we collected 29 pairs of sunglasses and 115 hats. There were many insightful questions and responses to the presentation, and a lot of interest in helping affected Tanzanian’s was shown. We were able to create greater awareness and reduce the stigma that is present in people with albinism. The students we spoke with understood that the main difference between affected individuals and themselves was really just skin colour. In addition, the teachers were appreciative to have us speak to their classes on a topic that they would not typically be exposed to. I hope to continue to accept donations and to speak with other schools and classes throughout my next year at Sarah Lawrence College. For more information on albinism, or to help our cause and donate gently used hats or sunglasses please contact Kristen at kmiller1@gm.slc.edu. Other resources for additional Information include Positive Exposure or Under the Same Sun.