CELEBRATING ADVANTAGE AFRICA

Advantage Africa is an organization with a noble mission: to uplift individuals affected by poverty, disability, and HIV by enhancing their education, health, and income prospects. In their unwavering commitment to addressing the challenges faced by those with disabilities, they undertook a project titled "Improving the Lives of People with Albinism" in Busoga district, Uganda. The primary goal was to raise awareness about the needs and potential of persons with albinism(PWAs), mitigate discrimination and ensure inclusivity of PWAs. This project, conducted in partnership with the Source of the Nile Union of Persons with Albinism (SNUPA), which is transforming the lives of over 1,000 persons with albinism (PWAs) in Uganda, focused on five major actualization projects and a crucial research endeavor.

Skin Cancer Prevention and Treatment

 One of the most significant challenges PWAs face is their heightened susceptibility to skin issues, primarily due to their lack of melanin, which provides natural protection against UV radiation. PWAs are prone to severe sunburn, solar elastosis (wrinkling), actinic cheilitis (sore and rough lips at risk of turning cancerous), and solar keratoses (rough areas that can also become cancerous). Tragically, statistics indicate that individuals with albinism often succumb to skin cancer between the ages of 30 and 40, making it among the leading causes of their death.

Advantage Africa, in collaboration with Ultrasun UK, has taken proactive measures to tackle this issue. They ensure access to protective resources such as high Sun Protection Factor (SPF) sunscreen and wide-brimmed hats. Moreover, regular skin clinics have been established, offering cryosurgery - using liquid nitrogen to remove pre-cancerous lesions. This initiative is proving to be a lifeline, effectively halting the prevalence of skin cancer among PWAs. 

A doctor performing cryosurgery on a lady with albinism

The organization's relentless efforts have even extended to influencing the Ugandan Government Revenue Authority to grant tax and duty-free supplies of sunscreen for PWAs. Furthermore, district centers across the Busoga sub-region of Uganda now host skin clinics every four months, where individuals receive thorough skin check-ups, Ultrasun high-SPF sunscreen, lip salves, wide-brimmed hats, sunglasses, long-sleeved shirts, and essential training on sun protection, courtesy of the organization.

Eye Care and Enhancing Vision for PWAs 

Visual impairments are another significant challenge faced by PWAs. Scientifically, this is attributed to the lack of melanin in the eyes, which affects the development of the retina and optic nerve. Advantage Africa has been instrumental in supporting sixty children and young people, significantly improving their vision. This intervention is not only aiding them in realizing their academic potential but also fostering self-assurance and safety in their daily lives.

A lady with albinism going through a series of eye tests

Education for Children with Albinism

Education is often a stumbling block for children with albinism in Uganda. Parents' fears of bullying and attacks frequently lead these children to stay at home instead of attending school. Advantage Africa and SNUPA are addressing this by educating teachers, pupils, and parents in the Busoga sub-region about the causes of albinism and the rights of PWAs. Furthermore, they have facilitated eye assessments and provided spectacles to support a seamless learning process. Collaborating with teaching staff, they ensure that children with albinism are allowed to wear wide-brimmed hats and long-sleeved uniforms for protection against UV radiation. These initiatives are gradually transforming the region's schools into more inclusive and welcoming environments for children with albinism.

A classroom with one student with albinism

Income Generation for Persons with Albinism

PWAs often face discrimination, which results in exclusion from income-generating activities. Advantage Africa, in partnership with the Source of the Nile Union of Persons with Albinism, SNUPA, is tackling this issue head-on. They provide skill training, offer loans, and equip PWAs to jumpstart their journey to financial freedom. The establishment of the 'Severe Hardship Fund' is a pivotal step toward breaking the cycle of poverty and boosting PWAs economically and financially while also shifting community attitudes from discrimination to respect.

A lady with albinism selling pineapple to one of the team members at Advantage Africa.

Advocating for the Rights of PWAs 

Advantage Africa collaborates closely with SNUPA to advocate for policy and practice changes at local and national levels in Uganda. Their efforts include targeted advocacy with the Ugandan government to ensure that the needs of PWAs are integrated into national planning. They also host events aimed at dispelling myths and ignorance surrounding albinism. Notably, in 2017, the organization successfully lobbied the Ugandan Government Revenue Authority to waive taxes and duties on high sun protection factor sunscreen, thus increasing accessibility of sunscreen.

A boy with albinism holding his pack of sunscreen

One remarkable event is the annual gathering on June 13th every year in Jinja, Uganda, where 700 PWAs come together for a march, speeches, and entertainment, drawing up to 5,000 attendees. This occasion serves as an opportunity for SNUPA to distribute sunscreen, wide-brimmed hats, sunglasses, long-sleeved shirts, and conduct skin clinics. Through such events where the media is present, messages about the equal human rights of PWAs have reached millions of Ugandans through national TV broadcasts, and even international audiences through outlets like Al Jazeera, the BBC, and The Guardian, thus creating awareness about Albinism.

A group of people during a marathon in Uganda

“We Are Human Too" 

The culmination of Advantage Africa's research project is the document titled "We Are Human Too." This endeavor aimed to investigate the impact of stigma on the education and life opportunities of children with albinism. The findings have shed light on various issues related to albinism, effectively bridging the gap between PWAs and the general public. It is a testament to the organization's commitment to empowering PWAs, advocating for their rights, and reshaping societal perceptions.

Advantage Africa's unwavering commitment to improving the lives of people with albinism in Uganda is a beacon of hope. Through their multifaceted approach encompassing awareness, healthcare, education, income generation, and advocacy, they are creating lasting change and fostering a more inclusive society where PWAs are recognized for their humanity and potential. As they continue their vital work, they serve as an inspiration to us all, reminding us that equality and justice are essential for every individual, regardless of their skin color or condition.