I met Lodina 14 years ago, she was the second of eight children and her name in Chichewa – the local language of Malawi – means “the country betrayed us”. Her HIV-positive cousin sexually abused her, believing that sex with a woman with albinism would cure her of AIDS. After the rape, the village chief convened a council to decide how to deal with the matter. For his mother, they shouldn’t be hard on his nephew as he was family and family is the balance. The father thought otherwise, it was time someone respected his honor and had pity on his offspring. Traditional leaders, hospital officials and community leaders gave their opinions and discussed at length how the situation could be resolved.
Everyone spoke, everyone spoke their mind. Everyone except Lodina, the victim. It didn’t matter what she believed, what she felt. When the youngster arrived at the hospital where I worked as a pharmacist, she did not take her eyes off the floor, without tears, without an expression … I remember that when she was filling out her personnel file, when asked “Profession?” , she continued, eyes on the ground, and it was her older brother who replied, “She’s just there”: She’s just there.
I remember this story with sadness because at that moment I began to understand that there was very serious discrimination against people with albinism in sub-Saharan Africa.
I remember this story with sadness, because at that moment I began to understand that people with albinism in sub-Saharan Africa were seriously discriminated against due to the lack of knowledge about their genetic condition, which condemns them to a very complicated life.
A few months later I met Jeremiah, the first baby with albinism I held in my arms. This three week old little boy arrived with second degree burns on his face. When we explained the reason for these injuries to her mother, she burst into tears, overcome with guilt. No one had explained to her that her albinos son needed to protect himself from the sun. Within weeks of adopting good sunscreen practices, Jaremiah’s mom regained her smile. With this child I discovered that the other great enemy of people with albinism in Africa and the main cause of their extreme vulnerability is the sun.
Mafalda Soto, along with a group of young people, at the celebration of International Albinism Awareness Day in Dar es Salaam, Tanzania in 2014.Beyond Suncare
After living in Malawi for almost three years, I switched to work at a dermatology clinic in northern Tanzania, where I was faced daily with desperate stories about young albinos arriving with advanced skin cancer where “there was nothing to do”. . Tumaini – which means hope in Swahili – was one of them. Her tumor had spread too far, and although she was referred to one of the country’s two cancer centers, she died within two months. He was 28 years old, just like me at the time.
Skin cancer is the leading cause of death in people with albinism in many parts of Africa, ending their lives at a young age, before the age of 30. Despite having the highest prevalence in the world, albinism and its health consequences are unknown to institutions in most sub-Saharan countries.
Skin cancer is the leading cause of death in people with albinism in many parts of Africa.
Poor diagnosis and treatment, inadequate primary care, inability to adequately treat skin diseases, and a lack of prioritization of national health systems in the field of dermatology are some of the biggest challenges in countries like Malawi. Its two dermatologists and thirty dermatology technicians for nearly 20 million inhabitants explain the high incidence of skin cancer among albinos in the country.
Jeremiah, Tumaini and Lodina were the nucleus of what Beyond Suncare is today, a social health organization where we work to ensure that all albinos in Africa live a free and dignified life, protected from skin cancer and all forms of discrimination.
In Tanzania, we developed the first light protection cream that is specially tailored to the skin of people with albinism and their needs. Despite high quality standards, its manufacture is simple since the goal is local production in laboratories that give priority to hiring people with albinism. The dissemination of this cream is accompanied by education and awareness-raising in the most remote places.
A girl with albinism attends medical consultations in Uganda, where Beyond Suncare works with other local organizations.Beyond Suncare
We are also developing awareness sessions about this condition and sun protection to demystify the condition and the stigma surrounding it, and to encourage confidence and self-care practices. In addition, training local health workers is essential so that they have more knowledge and therefore can provide better services.
The distribution of the cream, as well as the education and awareness sessions, will be directed to the most remote places in coordination with public and private hospitals and clinics, schools and local platforms. We are currently running projects in Malawi, Angola, Rwanda and the Democratic Republic of the Congo. And very soon we will start a new one in Uganda.
I came to Malawi in 2008 with a plan to stay for nine months. I met Lodina, Jeremiah, Tumaini… And those nine months turned into nine years. That’s why I stayed, but if I continue today, it’s because, with enough support, we can ensure that people with albinism can feel protected, accompanied and fully enjoy their rights in every corner of Africa.
Mafalda Soto is co-founder and director of Beyond Suncare.
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