Lightness, a 13-year-old girl with albinism, and her family attend a Lutheran church every Sunday. Ukerewe Island, Tanzania

@2016 Sacha de Boer
Maria was only 7 in 2013 when she had to flee her home in Nyamwilolelwa, Mwanza in northwestern Tanzania. The little girl was confused about why her mother had to take her on this sudden trip. Her mother left her at a temporary holding shelter in Mitindo, almost 70 kilometers away from her home.

Maria, whose name we changed for her protection, was born with albinism, a skin condition that many still wrongly associate with witchcraft. Attacks on people with albinism in the late 2000s were perpetuated by rumors and myths that albino body parts held “special powers” that could be ritually unlocked by traditional healers. This led to hundreds of deaths and unimaginable suffering for people with albinism and their families.

Some community groups are making efforts to bring about a better understanding of albinism and to protect community members with albinism. These are positive steps in the long journey toward supporting people with albinism in Tanzania, and the government’s move to develop a national strategy, if it is carried out effectively, can roll out more of these successes across the country.

Maria’s father left her mother when she was born. He did not want any contact with Maria or her mother. Like many other people in Tanzania, he did not understand albinism, or how to support people with the condition. Maria’s mother, like many mothers of children with albinism, became a struggling single parent. She took Maria to the temporary holding shelter because she feared that she might not be able to meet her daughter’s needs or protect her from attacks. The shelters were meant to be temporary solutions offering safety and education for children with albinism.

However, many children at the shelters ended up feeling abandoned because their families could not or would not visit them. Some lived too far away to make regular visits or could not afford to make the trip. Communities still discriminated against people with albinism, rumors of attacks kept bubbling up, and some families continued to lock away their relatives who have albinism. And centers did not always keep good records, making it difficult to locate or reconnect families.

Maria didn’t see her mother for four years. She missed her family and cried when she thought about them. A few children went home during the holidays, and Maria felt that everyone had forgotten about her.

Nongovernmental organizations like Karagwe Community-Based Rehabilitation Programme (KCBRP) have stepped in to help address this problem. KCBRP began meeting with families and villages around Mwanza, Geita, Kagera, Shinyanga and Simuyu in September 2017, making a case for reuniting the children in the shelters with their families. They held candid discussions about parents’ fears about bringing their children home. With support from local governments, communities are pledging to protect these children and their families and to help families visit their children who remain in the shelters.

As a result of these meetings, Maria’s mother visited her surprised but overjoyed daughter at the Mitindo shelter in December 2018. For the first time in four years, Maria went home with her mother for the Christmas holidays. She was not allowed to get out of the house to play, though, as her mother was still concerned about her safety.

Such reunions are now common in the temporary holding shelters in Lake Zone regions. More families are visiting their children regularly or bringing them home for holidays, trying to rebuild relationships. Other families are trying to trace children they left at shelters years ago.

Since people with albinism are susceptible to skin cancer, KCBRP has worked with schools in Lake Zone regions to ensure that students can modify their uniform to wear long sleeved shirts, hats and trousers for more coverage to protect them from the sun.

East African governments developed a regional action plan for people with albinism in 2017. This plan is guiding Tanzania in developing a strategy to protect and support people with albinism nationally. Nongovernmental groups and state institutions are working together to release a national action plan on albinism later this year, to address stigma and structural issues that lead to discrimination against people with albinism.

The plan is analyzing health and education policies to ensure that public institutions provide effective services to people with albinism. For example, the health policy should create a community health fund for families of people with albinism which would address the risks of skin cancer among people with albinism, and include a requirement for public health centers to provide sunscreen lotion and hats for people with albinism.

The plan should also include information to the media and in communities to increase public knowledge about albinism and to end the stigma against it. The plan should outline the responsibilities of the government, communities, and families for protecting people with albinism and meeting their needs and a system to make sure that people get the services and protection they need.

The national action plan will also enable many children like Maria to return to their families and communities, where they can go to school and play together just as all children should.