People with albinism in East Africa face profound social stigma and isolation, due to the negative myths that surround the condition. In addition, most children with albinism have early signs of skin cancer by their teen years, and only 2% of people with albinism live to reach their 40th birthday. As a result, a lack of understanding about albinism can certainly be fatal.
Our awareness initiatives have three focuses: to teach people with albinism how to reduce skin cancer; to give people with albinism and their families a basic understanding of the condition; and to eliminate the myths surrounding albinism. We organize “Albinism Awareness Days” in rural areas; sponsor dermatology clinics; produce informational radio programming; and teach one-on-one self-care skills to adults and kids with albinism.
Sun Safety and Skin Cancer Treatment
One of the most important aspects of our work is to teach people with albinism and their families about how to stay safe in the sun. Many people with albinism and their families do not understand the link between sun exposure and cancer. Thus, it is critical to teach people that simple precautions like wearing long sleeves and hats can dramatically reduce the incidence of skin cancer.
We are mindful that most people in East Africa must work outside to survive, and we stress that farming is a viable option for people with albinism. However, we explain that they should seek shade whenever possible, wear protective clothing and minimize their exposure during the brightest parts of the day.
Sunscreen, while not widely available, is another important tool to explain and demonstrate. On a recent trip to Tanzania, Asante Mariamu volunteers learned that mothers were applying sunscreen to their children at night, like a lotion. While we prefer to focus on more sustainable methods of sun protection, we teach families how to properly apply sunscreen.
We work with local dermatologists to provide skin cancer screenings and treatment. In March of 2016, we organized five clinics in rural Uganda, educating approximately 500 people and performing surgery on 41 patients.
The negative myths that surround albinism contribute to the isolation and mistreatment that many experience. Some people in rural East Africa believe that people with albinism are “ghosts” or that albinism is a curse. Also, some people believe that having sexual relations with a person with albinism can cure HIV. Very few people understand the genetic nature of albinism – that it is an inerited condition. In fact, the word “albinism” doesn’t even exist in Swahili; and albinos are often called “zeruzeru,” which literally means “zero zero.”
In an effort to combat the deadly myths that surround the condition, Asante Mariamu has created simple brochures and posters to explain the basics about albinism, and also to explain what albinism is not. This material is distributed in rural villages, at Albinism Awareness Days and by our partner organizations. Our orange bracelets deliver our message in Swahili” “People with albinism are just like you and me.”
Albinism Awareness Days
Asante Mariamu supports the celebration of International Albinism Awareness days but hosts regular events that bring together community leaders, people with albinism and their families, local politicians and members of the community. Our goal is to demystify the condition for the general public, and to educate people about albinism.
We also seek to build relationships between people with albinism, and foster a sense of community. One of our goals is to put Asante Mariamu out of a job by creating local advocacy groups who can empower, educate and assist people with albinism.