By Kitts D.Mabonga and J.L. Andrew
Rights
Kampala-Uganda: The Albino community in Uganda has urged the government to enhance the regulatory framework to guarantee equal human rights for all citizens, including the Albino population.
In their albinism umbrella concept paper, they emphasize the importance of unity among all stakeholders to combat discrimination against individuals with albinism.
Jennifer Nanyondo, the program officer of Albinism Umbrella Uganda, stated in an exclusive interview with the East African Gazette that the organization aims to provide a collective voice for people with albinism in Uganda.
The International Albinism Awareness Day was commemorated in Tororo, Uganda on June 13, 2024.
Nanyondo expressed the vision of the organization, which is to create a society where individuals with albinism can realize their full potential and have their rights protected.
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She also highlighted the significance of the United Nations’ resolution that established June 13th as International Albinism Awareness Day, aiming to advance the rights of individuals with albinism and amplify their voices.
Uganda is home to 20,000 individuals who are living with albinism, according to estimates.
Globally, People with albinism face a variety of problems, the most common of which are financial constraints, health complications due to a lack of adequate medical care, a lack of community support leading to stigma and discrimination, and superstitious beliefs.
However, there are inspiring young individuals who challenge these stereotypes and use their talents to promote a shift in societal perceptions.
Their stories serve as a powerful example that albinism does not define a person, aligning with the goal of SDG 17 partnerships to promote human rights for marginalized groups, including individuals with albinism.
The IAAD commemoration were in line with the goals of the 2nd Global Disability Summit 2022, which aims to draw global attention and focus on an overlooked area, as well as introduce fresh perspectives and approaches to enhance participation.
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Additionally, it reflects on the essence of the Sustainable Development Goals (SDGs) by ensuring that no one is left behind, and by empowering marginalized groups who are at risk of being disregarded in the SDGs’ implementation.
The celebration also aligned with the National Action Plan for Persons with Albinism in Uganda, which focuses on promoting full participation, ending discrimination, and addressing abuses against individuals with albinism.
It aims to raise awareness and create a society that is inclusive and accessible for all.
Additionally, the commemoration is in line with the principles and objectives of the Committee on the Rights of Persons with Disabilities (CRPD), particularly Article 5 and Article 3, which emphasize non-discrimination and participation.
The objectives of the commemoration include creating awareness about albinism, showcasing positive messages, promoting dialogue among stakeholders, and addressing vulnerabilities, marginalization, stigma, and social exclusion.
Various activities have been organized, such as mobilizing persons with albinism, conducting radio talk shows, organizing awareness caravans, and holding peaceful marches as part of creating awareness in communities.
Flyers with information about albinism in local languages were also distributed communities. The aim is to shed light on the lives of persons with albinism, promote diversity, and work towards eliminating discrimination and stigma.
It also serves as a platform for advocacy, awareness, partnerships, and dialogue among different stakeholders.
About albinism
Albinism is a hereditary disorder characterized by the absence of melanin pigment in the skin, resulting in a distinctively pale appearance.
In most African sub-regions, approximately one in every 15,000 individuals has albinism. However, in Tanzania, the prevalence is higher, with one in every 1,400 people being affected, making it the country with the largest albino population in Africa.
Unfortunately, albinos face severe persecution, particularly in the regions of Shinyanga and Mwanza, where witch doctors propagate beliefs about the supposed magical and superstitious properties of albino body parts.
It is estimated that 1 out of every 20,000 individuals across the globe are born with oculocutaneous albinism. This condition can be found in various ethnic groups and geographical areas. The most prevalent forms of this condition are types 1 and 2, while types 3 and 4 are less frequently observed.
Causes
According to scientists, albinism arises from mutations in specific genes that control the production of melanin.
These genes exhibit a recessive trait, necessitating both parents to carry the gene in order for it to be inherited. Albinism is not classified as a disease, but rather a genetic condition that individuals are born with.
There are various types of albinism, and the level of pigmentation varies depending on the specific type one possesses.
Individuals with albinism face a heightened risk of developing skin cancer, which accounts for at least 80 percent of fatalities, as stated by the UN.
According to various studies, it is estimated that 98% of people with albinism do not live beyond their 40th birthday.
Although there is no known cure for the absence of melanin that characterizes albinism, the condition can be effectively managed by avoiding direct exposure to sunlight, utilizing high-quality sunglasses that offer protection against ultraviolet rays, and wearing sun-protective clothing and hats when spending time outdoors.