BY INNOCENT KIIZA
Chrisha shields her eyes from the blinding sun as she steps out of the house, her small frame quickly retreating to the shade. The scorching Ugandan sun feels like an enemy, a constant reminder of her vulnerability. Yet, despite the harshness of the day, her smile is warm and inviting as she welcomes me into her family’s modest home in Kasese District, nestled in the southwestern part of the country. It’s a smile that hides much of her pain—both physical and emotional.
At just 12 years old, Chrisha is no stranger to suffering. She has Oculocutaneous Albinism Type 2 (OCA2), a genetic condition that leaves her skin, hair, and eyes devoid of melanin, making her particularly sensitive to sunlight. For children like her, the sun is not just an inconvenience; it’s a constant threat. With each step she takes outside, the unforgiving rays trigger itching, discomfort, and at times, painful skin sores.
“I love the rain,” Chrisha says softly, her voice almost drowned out by the buzzing of cicadas outside. “It’s the only time I can play outside without feeling like my skin is burning.”
The Ugandan climate, increasingly unpredictable due to the changing global environment, has made Chrisha’s already tough life even harder. The temperatures are soaring higher, leaving her with fewer moments when it’s safe for her to step outdoors. “When it’s too hot, I have to stay inside all day,” she says, pointing to the dark corners of their humble house. “But I miss school a lot.”
Her family can’t afford sunscreen—a vital protective layer for her delicate skin. The Ugandan government, in a bid to boost local production, imposes steep taxes on imported goods. Sunscreen, crucial for Chrisha’s survival, falls under the heavy 33% combined tax rate. For Chrisha, this means enduring the sun unshielded, risking serious skin damage and, in the long term, a heightened possibility of skin cancer.
“We try,” her mother explains, her voice tinged with worry. “But the cheapest sunscreen costs over 80,000 Ugandan shillings (about USD 21), and it only lasts a month. How can we afford that when we have so little?”
Chrisha dreams of becoming a policewoman, driven by a deep-seated desire to uphold justice in her community. But the path to that dream is fraught with more obstacles than a child should face. Most days, she struggles just to make it to school. “Sometimes I sneak away to the river to cool off,” she admits with a sheepish grin, though there’s a sadness in her eyes. “I know it’s wrong to leave school, but I can’t bear the heat.”
Her eyesight also suffers under the glaring afternoon sun. Chrisha often finds herself straining to see what the teacher writes on the chalkboard. “I always have to check my friend’s notes to make sure I’m not missing anything,” she says, her voice small but determined. “But sometimes, I fall behind.”
Beyond the physical pain and academic hurdles, Chrisha also faces the cruelty of isolation. Many of her peers shun her, believing in the local superstitions that still linger around albinism. “Some kids think I’m a ghost,” she says, her voice trembling with a mix of frustration and sadness. “They say I disappear at night or that I bring bad luck.” Despite the rejection, Chrisha continues to hold onto hope. She finds comfort in playing football, though the intensity of the sun often forces her to sit out the matches she loves.
Sixteen-year-old Rebecca, another girl from the same community, shares Chrisha’s struggles. “My parents couldn’t afford sunscreen either,” Rebecca recalls. “We used whatever lotion we could find, but it didn’t help. My skin would itch and turn into scabs.”
Rebecca’s saving grace came when she joined the Lyakirema Initiative of Persons with Albinism (LIPA), a local nonprofit that provides free sunscreen to children like her. But even with this support, Rebecca’s life remains a challenge. The stigma of her condition follows her wherever she goes. “People point at me when I walk to school,” she says quietly. “They tell their children not to play with me, so I spend most of my time alone.”
Rebecca dreams of becoming a Member of Parliament one day to advocate for the rights of people with albinism. “We need sunscreen and eye care for free,” she says passionately, referencing Uganda’s Persons with Disabilities Act of 2006, which promises access to education and health services for children like her. But for Rebecca, as for so many others, the gap between government policy and reality is glaring.
As the world grows hotter, children like Chrisha and Rebecca are being left to fend for themselves. Their vision deteriorates further under the sun’s bright rays, their skin reacts violently to the heat, and their futures seem tied to the whims of government taxes and global climate change.
With every year, the Ugandan climate grows harsher, leaving fewer safe hours for Chrisha to play, learn, or just be a child. Her dreams of becoming a police officer and Rebecca’s aspirations of standing up in parliament grow dimmer under the scorching sun and the weight of systemic neglect. For now, they fight on, navigating a world that offers them little protection from its growing heat.
Rebecca points out that the government’s decision to impose taxes on sunscreen has made it nearly impossible for her family to afford the product, which is vital for protecting her skin from UV radiation. “Sunscreen and eye care should be provided free of charge in hospitals, just like other essential medicines,” Rebecca says with determination.
She refers to Uganda’s Persons with Disabilities (PWDs) Act of 2006, which guarantees the right to education, health services, and social protection for persons with disabilities, including children with albinism. However, the gap between policy and practice remains wide. Both Chrisha and Rebecca have approached their teachers for help, but little has changed.
Jolly Mbumbu, a teacher who has educated several children with albinism, acknowledges the challenges but lacks the knowledge or resources to provide the necessary accommodations. “The education system mandates accessible and quality education for all children, including those with special needs. Yet, in practice, we are not equipped to support children with albinism,” Mbumbu admits.
The consequences of this systemic failure are dire. Children like Chrisha and Rebecca are left to navigate their education and daily lives with little support, all while the effects of climate change worsen.
Rising temperatures, prolonged sunny seasons, and stronger UV radiation put these children at an even higher risk of developing skin cancer. Rebecca’s dream of advocating for children with albinism and other disabilities stems from these personal struggles.
Dr. Johnson Bwenge Bwambale, an ophthalmologist at Bwera Referral Hospital, explains that albinism is a genetic condition that affects the production of melanin, the pigment responsible for skin, hair, and eye color. He clarifies that in people with albinism, the melanocytes—the cells responsible for producing melanin—do not function properly.
This leads to lighter skin and hair than is typical for their ethnicity, as well as a range of associated health issues. For children with albinism, one of the most common health concerns is related to vision. Dr. Bwambale notes that, due to the lack of melanin, these children often have difficulty controlling the amount of light entering their eyes. “Melanin is supposed to be present in the eyelashes and within the pupil to regulate light intake, but in children with albinism, this regulation is impaired,” he says.
As a result, they frequently experience light sensitivity and vision problems. Another major health issue for children with albinism is related to their skin. “Because their skin lacks melanin, they are highly sensitive to sunlight and prone to sunburn,” Dr. Bwambale explains.
The hot, dry season in Africa, characterized by extreme temperatures, can cause severe discomfort and increase the risk of sun damage for these children. “They tend to fare better in cooler, rainy seasons, but during the dry season, their skin reacts more severely to the sun’s rays, leading to frequent complications,” he adds. To mitigate these effects, Dr. Bwambale emphasizes the importance of preventive measures.
“We can’t prevent albinism, but we can reduce the effects it has on their health. One of our key recommendations is to limit exposure to direct sunlight by staying indoors or wearing protective clothing.” He also advises the use of sunglasses to help control light entering the eyes and recommends sunscreens to protect their sensitive skin.
However, he acknowledges that financial barriers often prevent families from accessing these essential protective measures. Beyond physical health, Dr. Bwambale highlights the psychological challenges faced by children with albinism. “These children often face severe stigma in their communities.
They are called names like ‘children of ghosts’ or ‘bad luck,’ and this social rejection can have a deep psychological impact,” Dr. Bwambale says. The alienation they experience due to their skin color and the myths surrounding albinism can lead to issues like low self-esteem and reluctance to attend school or participate in community activities.
Dr. Bwambale calls for greater mental health support for these children, emphasizing the need for rehabilitation programs to help them cope with the psychological toll of discrimination. He also urges the Ministry of Health to prioritize their healthcare needs by classifying essential protective items like sunscreen and eye care products as part of Uganda’s essential drug list. “These children need more than just physical care; they need mental support and inclusion to live dignified lives,” Dr. Bwambale says.
Ikwera Alfred Kule, a community leader, says people have different perspectives on children with albinism, and children are viewed as misfortunes in communities. If a woman has given birth to an albino child, culturally they could look at both the child and mother as people of bad luck.
He added that people with albinism are believed to be related to the spirits of Mt. Rwenzori, and if one gives birth to an albino child, it is perceived as a spirit child. “It is believed that if one dreams of marrying a white person, culturally they believe that the person has slept with the mountain spirits of Rwenzori,” Kule says.
The Deputy Minister for Information, Mobilization, and Kingdom Spokesperson of the Obusinga Bwa Rwenzururu, Barbara Kabanyoro, says the community has a lot of misconceptions that albino children are conceived through sleeping with a white spirit, which is not correct. “I recall a case where a man ran away from home after a woman gave birth to an albino child, and the woman was tasked to inform the father of the baby,” Kabanyoro says.
However, Rev. Fr. Kambale Balinandi condemned this act, calling it permissiveness of the highest order, adding that people need to be educated and sensitized about children with albinism and how they are like other children in the community to combat the misconceptions the community has about them. He says that it’s only that their skin lacks melanin, which is why their skin is different from others, but they are human beings like others and possess the same blood.
Meanwhile, Rev. Fr. Balinandi believes that climate change affects them a lot as high temperatures rise and their bodies are affected, changing their color and putting them at risk of acquiring skin cancer. Kabanyoro, the Kingdom Deputy Spokesperson, mentioned that Kasese District, being on the equator line, experiences changing weather patterns and high temperatures in the sunny season, as well as very cold weather during the rainy season.
However, she mentioned that as leaders, they are embarking on advocacy for mindset change among the people in the community and leaders at the grassroots level to change people’s attitudes toward children with albinism. She added that people need to be sensitized about children with albinism and treated like other children, not discriminated against. “Teachers have to be sensitized on how to treat these children, providing them a safe environment as mandated by law, protecting them from harm and ensuring their well-being,” Kabanyoro says.
Ikwera also asserts that climate change, especially high temperatures, affects children with albinism and their well-being in schools, as he mentioned that some even miss school during hot seasons. Meanwhile, the community has embarked on tree planting to mitigate the impact of climate change in the community, which also benefits children with albinism.
“There are some misconceptions people believe about people with albinism, which need to be condemned, like the belief that if you sleep with an albino, you will gain riches or heal from HIV/AIDS, and that their body parts are used for rituals,” Kule says. He condemned the minister’s remarks, which neglect the health issues of albinism regarding skin cancer, considering it a minor issue, yet they have the right to health like other people.
The Minister for Health, Hon. Dr. Jane Ruth Aceng, revealed that as a government, they can’t concentrate on skin cancer issues suffered by persons with albinism and leave out fundamental issues like malaria, which kills many people every day in Uganda.
“The country needs to address things step by step, focusing on emergencies before dealing with other fundamental issues, and right now the most serious emergency in the health sector is malaria,” Hon. Ruth says.
Ikwera, like Bahuka, argued that every death counts and matters in the country, condemning a minister for the neglect of health issues regarding persons with albinism. It is unfair for the Honorable minister to overlook such health concerns. However, they recommended that the country waive taxes on sunscreen and provide it freely, just like other essential drugs at health facilities, which could solve the problem.
The Kingdom Spokesperson Kabanyoro added her voice to those of the other leaders, calling on the government of Uganda to waive taxes on sunscreen lotions and consider them essential drugs in health facilities.
Civil society organizations like the Lyakirema Initiative of Persons with Albinism (LIPA) and the Albinism Umbrella (AU) are trying to fill the gap by providing sunscreen to vulnerable children.
Emmanuel Buhaka, the Executive Director of LIPA, highlights the severity of the issue. “In Kasese District alone, persons with albinism are 100 times more likely to develop skin cancer due to increased exposure to UV radiation from rising temperatures. Many don’t live beyond 55,” he warns.
A 2023 survey by LIPA found that Kasese has 247 persons with albinism, 81 of whom are school-going children.
“We have reached out to government bodies to make sunscreen available for free in hospitals. We have written to the ministry but received no response. The lack of sunscreen is a crisis for children with albinism, and this needs to be addressed urgently,” he emphasizes. To combat misconceptions and stigma in the community, Bahuka is advocating for education about albinism in schools. “These children need to feel included and accepted. We are advocating for their rights and demanding action from the government, which is failing in its duty to protect its citizens,” Bahuka asserts.
Rebecca recalls being pointed at and shunned by her peers. “People call me bad luck, and some parents tell their children not to play with me,” she says. Such social exclusion compounds the physical challenges they face due to climate change and inadequate medical care. LIPA and the Albinism Umbrella, together with other advocacy groups, are pushing for greater awareness, education, and inclusion for children with albinism.
Bahuka emphasizes the need for action: “As climate change intensifies, we must educate children with albinism on how to demand their rights. Authorities, especially the government, need to prioritize their inclusion in all sectors, especially health and education.”
In the fight to protect children with albinism in Uganda, civil society organizations like the Albinism Umbrella have taken center stage in advocating for their rights and well-being. Mrs. Olive Namutebi, the Executive Director of Albinism Umbrella, shares the organization’s mission and their tireless work in supporting these vulnerable children.
Albinism Umbrella’s Mission and Vision
With a vision of “A society in which persons with albinism are dignified and realize their full potential,” Albinism Umbrella has dedicated itself to promoting and protecting the rights of persons with albinism (PWA) in Uganda through research, partnerships, and advocacy. The organization’s mission reflects its commitment to improving the overall well-being of children with albinism, ensuring that their rights to education, health, and social inclusion are upheld.
Despite these efforts, significant challenges remain. As Namutebi notes, stigma and neglect continue to plague children with albinism. “Many children with albinism are abandoned at birth, left to be raised by grandparents or other relatives while their parents reject them,” she explains.
The impact of this abandonment is profound, with many children missing out on education. According to research conducted by Albinism Umbrella between 2018 and 2021, 50% of school-age learners with albinism were out of school due to poverty, bullying, and name-calling.
Namutebi also draws attention to the compounded effect of climate change on the well-being of children with albinism. “Climate change has a direct impact on persons with albinism, as sun exposure leads to skin cancer. The extreme weather conditions in Uganda have made it even more difficult for these children to walk long distances to school or gather firewood, all under the scorching sun,” she explains. This not only limits their participation in daily activities but also increases their health risks.
Advocacy and Awareness
In their efforts to advocate for the rights of children with albinism, Albinism Umbrella engages in advocacy at multiple levels, such as community, national, and global. At the community level, parents and caregivers are educated on how to care for their children with albinism. On the national front, the organization collaborates with Uganda’s Ministry of Education to ensure that learners with albinism receive appropriate accommodations, such as protective gear and large print exams from the Uganda National Examinations Board (UNEB).
Their advocacy extends to the health sector, where they partner with institutions like Mengo Hospital, National General Referral Hospital, and Ruharo Mission Hospital to provide sunscreens and eye care services. Namutebi points out that their advocacy efforts have already led to the recategorization of sunscreens from cosmetics to assistive technology, bringing them closer to being included on Uganda’s essential drug list.
Districts with the Highest Populations of People with Albinism (PWA)
Summary of the findings:
- Sironko (20.2%), Bududa (17.9%), and Manafwa (17.5%) have the highest populations of PWA, followed by Kamuli and Buyende (10.3%).
- The numbers of children below 18 years with albinism were highest in Sironko (26.4%) and Bududa (25.6%) districts.
- The highest number of adults was found in Buyende (16.9%) and Kamuli (13.8%) districts, respectively.
- 67.7% of persons with albinism did not know the causes of albinism.
- 76% did not know what causes skin cancer and how to prevent it.
- 75.7% of the respondents have an eye problem.
- 72.2% of persons with albinism could not read clearly because they did not have any reading glasses; however, almost half of the respondents (47.5%) admitted to not using anything.
- Also, 43.5% of the children reported cases of discrimination by fellow pupils, at home, and within the community.
Community and Government Engagement
Albinism Umbrella works closely with local communities and government bodies, leveraging government structures to identify and support children with albinism. The organization has a memorandum of understanding (MOU) with Uganda’s Ministry of Health and Ministry of Gender, Labour, and Social Development, as well as partnerships with other government agencies such as the Equal Opportunities Commission (EOC).
While Uganda has policies to support children with albinism, Namutebi emphasizes the need for more effective implementation. She calls for more awareness among stakeholders, especially schools and healthcare providers, about the unique needs of children with albinism. “We have enough policies to support children with albinism, but we need their implementation. Stakeholders need to provide reasonable accommodations,” she urges.
As the effects of climate change intensify and the challenges faced by children with albinism become more pronounced, the work of organizations like Albinism Umbrella is more critical than ever. Namutebi’s call for action echoes the pleas of children like Chrisha and Rebecca, who continue to navigate a world where their rights to education, health, and safety are compromised by both systemic failures and environmental threats.
The effects of climate change are far-reaching and particularly dangerous for vulnerable populations. A UN report by the Independent Expert on Albinism, Muluka Anne Miti-Drummond, reveals that people with albinism in Africa are 1000 times more likely to develop skin cancer, with many dying before the age of 40.
The report also highlights how climate disasters disproportionately affect people with disabilities, who are four times more likely to die in such events. As Uganda grapples with the impacts of climate change, children with albinism like Chrisha and Rebecca are bearing the brunt.
“I want to change the policy that makes sunscreen inaccessible by removing the heavy taxes on it,” she emphasizes passionately. “For people with albinism, sunscreen is a necessity, not a luxury. The government must lift these taxes and ensure that eye care and skin protection are provided for free, as mandated by the Persons with Disabilities (PWDs) Act,” Rebecca emphasizes.
THIS STORY WAS PRODUCED WITH THE SUPPORT OF MEDIA MONITORING AFRICA AS A PART OF THE ISU ELIHLE AWARDS.
NB: NAMES OF THE CHILDREN ARE NOT THEIR REAL NAMES.