Defying the sun: Working for the Inclusion of Children with Albinism

Surrounded by pristine waters, the Félix Estéban Oller High School is located on Nargana Island, also known as Yandup, which belongs to the Guna Yala Comarca. This school accommodates more than 300 students from the seventh to the twelfth grade. Among them is Nailineth Solano, a 16-year-old girl of the Guna indigenous ethnic group, who is in the ninth grade.

Like any teenager, Nailineth enjoys spending time with her friends at school. However, her interaction is limited by sunlight because she was born with albinism, a genetic condition characterized by the absence of pigmentation (melanin) in the skin, hair, and eyes, which forces her to avoid exposure to the sun.

Her mother, Natividad Solano, says she wishes Nailineth could develop like any other teenager, playing and enjoying physical education classes with her classmates. However, year after year, she has to ask the physical education teachers to give her theoretical assignments, in order for her to avoid being exposed to the sun, since the gymnasium has no roof and the children must take classes under the radiant daytime sunshine. For Nailineth, this precaution is necessary, as the sunlight affects her eyes and makes her more vulnerable to diseases, such as skin cancer.

For Natividad, her daughter “feels limited, as she would like to play volleyball like other children, but she cannot expose herself to the sun. She can only sit and watch her friends play and have fun, while she misses out on the opportunity to develop her sports skills”.

Nailineth's story is known by Ceily González, a member of SOS Albino, an NGO that seeks to raise awareness about albinism, promote inclusion, and guide families with albino children. Ceily, 25 years old, is also from the Guna ethnic group and is the youngest of three sisters; her twin sisters are also albinos.

Ceily, who was born in Panama City, studied between the ages of 13 and 16 at the Félix Estéban Oller School, and remembers that, although teachers in the Comarca are more aware that albino children should not be exposed to the sun, there is insufficient infrastructure in order for them to participate in recreational activities.

She remembers how she enjoyed swimming lessons in the sea, despite the sun, the serious burns on her skin, and her mother's scolding, because she did not want to miss out on the fun. A sporting activity which, to this day, she loves to engage in. However, the lack of access to indoor pools or night-time schedules prevents her from doing it as often as she would like.

An intervention that will change childhood memories

In 2021, Panama passed Law 210 declaring June 13, National Albinism Awareness Day and adopted other measures for the protection of the rights of people born with this condition; a law that was promoted by the NGO, SOS Albino.

However, in Panama there is no census to determine the number of people living with albinism, but the condition is well known in the Guna Comarca, since around the world, it is felt that the Guna population has one of the highest prevalence rates of albinism.

Achieving the inclusion of albino children and ensuring that they can enjoy their childhood, as well as all their rights, requires the adoption of measures that allow children to be active members of their community. In this regard, one of the main objectives of the Indigenous Peoples Development Project in Panama, which is spearheaded by the Ministry of Government, with technical and financial support from the World Bank, is the construction and improvement of different facilities and the infrastructure of key services, such as health and education in indigenous Comarcas.

Included in the projects executed in the Guna Yala Comarca, is the improvement of the facilities at the Félix Estéban Oller school, since this school caters to young people who come from the different villages in the Comarca.

One of the highlights of the school's planned improvement work, which will start months from now, is the roofing of the gymnasium. The roofing of the gymnasium was a crucial request made by the school's parents, including Natividad, Nailineth's mother, during the consultation phase with the population. “The installation of the roof of the gym in schools is important because, in the Comarca, there is a large number of children with albinism,” says Natividad.

Ceily, who is making a difference with her work at SOS Albino, also believes it is important to pool efforts to raise awareness about the importance of making the country more accessible to people with albinism and reduce bullying and discrimination, as there is still a lot of lack of knowledge about the condition.

“If I could change anything, I would have liked to have had a freer childhood, because I couldn’t play with my neighbors, and that prevented me from having more friends,” say Ceily, who believes that with small adjustments, the life of a child with albinism can be improved and greater inclusion can be achieved, not only in the Comarca Guna Yala, but across the country.