A day in the life of women with albinism fighting to make a living

The midday sun beats down mercilessly on Jogoo Road in Nairobi, where drops of sweat trickle down Pascalia Kanini's pale forehead. Her trembling hands frantically search through her handbag beneath a table laden with colourful fruits, packets of biscuits, and bottles of water catching the sun's glare.

Despite the umbrella casting a wavering shadow over her small business stand, panic rises in her chest as she realises she's forgotten something vital – her sunscreen. The temperature has already climbed to 27 degrees Celsius, and her skin prickles with the familiar warning sensation of impending burns.

"I'll have to get Arimis—a milking jelly. Though it doesn't help much, it will keep me going," she says, resignation evident in her voice. Her fingers unconsciously trace the fading lesions on her arms – battle scars from previous days when protection wasn't adequate.

For Pascalia, a woman living with albinism, this isn't just about avoiding a sunburn – it's about survival.

The National Organisation for Albinism and Hypopigmentation, a US-based non-profit founded in 1982, emphasises the importance of person-centred language, recommending "persons with albinism" rather than "an albino" or "an albino person" - an approach that puts the person before their condition.

As global temperatures continue to rise and the ozone layer depletes, women like her face an increasingly dangerous reality. They are among the 9,729 Kenyans with albinism documented in the 2019 Census, fighting not just against stigma and discrimination, but against the very rays of the sun itself. Their daily lives are a careful choreography of timing, protective measures, and constant vigilance.

The Kenya National Bureau of Statistics analysis revealed that more women (2.5 per cent) than men (1.9 per cent) have a disability, with albinism being one of them.

A life-threatening reality

The morning sun streams through the windows of Janeread Nduku's home as she adjusts her curtains carefully, creating a protective barrier against the strengthening rays. Her movements are practiced, deliberate – the result of years learning to navigate a world where light itself can be an enemy. She lives with albinism.

"I have noticed that many people are unaware that sitting or standing next to a window exposed to direct sunlight can lead to skin lesions," she explains, gesturing to the thick curtains that shield her kitchen window.

"I don't cook or do the dishes by such a window because I know that prolonged exposure can increase my risk of skin cancer."

For persons with albinism in Africa, the statistics are more than numbers – they are a deadly reality. They are up to 1,000 times more likely to develop skin cancer than those without the condition, with many not surviving beyond the age of 40. The reason lies in their lack of melanin, the natural pigment that helps protect skin from harmful ultraviolet radiation.

The threat is becoming more severe with each passing year. The World Meteorological Organisation (WMO) presents a troubling forecast: there's a 47 per cent chance that global average temperatures will exceed 1.5 degrees Celsius above pre-industrial levels between 2024 and 2028 in latest report. This represents a significant increase from last year's 32 per cent prediction for the 2023-2027 period.

Although 195 countries, including Kenya, have committed to the Paris Agreement to limit global temperature rise to 1.5 degrees Celsius, the World Meteorological Organisation warns of a worst-case scenario.

The daily battle

In the dry hills of the sparsely populated Inchoroi village, where the temperature hits 35 degrees Celsius, Zipporah Ntinine has to be up by 6 am to get clean water from the drums placed on the roadside, some yards away from her home. In this semi-arid area of Kajiado West in Kajiado County, residents receive fresh water every two weeks from private investors for cooking and drinking. The rest is obtained from boreholes in nearby farms, sold at Sh10 per 20 litres.

"I avoid being in the sun between 10am and 4pm when it's at its hottest," Zipporah explains, her hands working skilfully with colourful beads as she speaks.

Her workspace is carefully positioned away from any direct sunlight, a testament to years of learning to adapt.

"If I stay out for more than an hour, I'll develop lesions. To prevent this, I apply lotion every hour or two, wear long-sleeved shirts or dresses, put on a wide-brimmed hat, and choose trousers and closed-toe shoes to cover my legs. But honestly, it can feel really hot and uncomfortable."

She adds, "I’d prefer to stay out of the sun to minimize my use of the lotion. To get that lotion, I have to travel by motorcycle to Kajiado County Referral Hospital, which costs me Sh2,000 for the round trip. If I develop a lesion, I need to undergo cryotherapy at the hospital. While treatment is free, I can't afford the travel expenses every time."

The rhythmic clicking of beads fills her home as she works on her craft. Zipporah creates beautiful beaded merchandise – necklaces, bracelets, belts, and headbands – generating around Sh15,000 monthly, though it may take up to three months to accumulate this amount. Each journey to deliver her products requires careful planning and multiple applications of protective lotion.

"To reach Isinya, the nearest town, I have to take a motorcycle to connect to Nairobi," she says, showing the careful wrapping she uses to protect her skin during travel.

"I ensure that I don't sit by the window during my ride. I reapply the lotion before making the return trip from Nairobi. Protecting ourselves is quite an expensive endeavour."

The cost of protection

Back on Jogoo Road, Pascalia arranges her fruits with careful precision, trying to stay within the shifting shadow of her umbrella. The morning rush has begun, and potential customers stream past her stand. Some stop, while others hurry by, occasionally throwing curious or uncomfortable glances her way.

For Pascalia, who must work outdoors to earn a living, the challenge is constant. On a good day, she makes Sh400 in profit, but this same amount is what she needs to spend on protective products when they're not available at the hospital. The cruel irony isn't lost on her – a day's earnings barely covers the cost of the protection she needs to work that day.

"I have to be away from work whenever I have lesions," Pascalia explains, her voice tight with emotion. "They are painful and uncomfortable. Some customers walk away as soon as they catch a glimpse of me, while others are condescending. They ask if the water in my bottles comes from the blisters. I'd much rather stay home to avoid that kind of abuse."

The cost of protection is staggering. A 200ml tube of SPF 50 of a common brand can cost up to Sh3,875, while a similar size of its aftersun is priced at Sh2,006. These prices are particularly challenging for women like Pascalia, who supports herself and her child as a single parent. Every shilling must be carefully weighed against competing needs – food, rent, her child's education, and the crucial lotions that keep her safe.

"I have a friend who helps me by contributing some money for the lotions, as I can't afford them on my own with the little I make," she shares, gratitude mixing with frustration in her voice.

"The sunscreen at the pharmacy costs Sh3,000, and the aftersun is priced at Sh2,000. That's quite a lot to spend."

The science of survival

Understanding why persons with albinism are so vulnerable to sun damage requires looking at the invisible threat they face daily. Three types of ultraviolet (UV) radiation – UVA, UVB, and UVC – bombard the earth's surface. While UVC is filtered by the atmosphere, both UVA and UVB pose significant risks to those without melanin's protective shield.

UVA rays, which can pass through glass, penetrate deeply into the skin and cause premature aging. UVB rays, though not penetrating as deeply, are responsible for the painful sunburns and can cause DNA mutations leading to skin cancer. Without adequate melanin protection, persons with albinism are extremely vulnerable to both.

According to the American Cancer Society, melanin serves as a crucial barrier, helping block damaging UV rays. The University of Texas MD Anderson Cancer Centre explains that UVA rays damage collagen and elastin in the skin while generating harmful free radicals.

Janeread, who works as a hairdresser in Nairobi, has developed an elaborate protection routine born from years of trial and error. Her morning ritual begins long before she steps out of her house.

"I protect myself very well," she explains, demonstrating her careful application technique. "Before I leave the house, I apply sunscreen lotion to all exposed areas, like my hands, face, legs, and neck. I wear light cotton or silk long-sleeved trousers. I also wear a pull neck or light scarf to protect my neck. I get sunburned if I wear heavy clothes."

As evening approaches, she has another ritual: "I cool my body with a cotton cloth drenched in iced water before applying the aftersun. Often, the burning begins after sunset. But there are times when people feel the burning hours later. If you have been burned by hot water or a hot cooking pot, then you know what that means. You can't sleep. You become restless."

The scientific evidence

Behind these women’s daily struggles lies a growing body of research that confirms the inadequacy of current protection methods. A 2017 study examining sun protection efficiency revealed troubling findings for people like her who rely on beach umbrellas. The research compared beach umbrellas to sunscreen with SPF 100, discovering that neither provided complete protection – 78 per cent of umbrella users still experienced problems from UV rays, while 25 per cent of sunscreen users faced similar issues.

The MD Anderson Cancer Centre provides crucial context about sun protection factors. The SPF rating only measures protection against UVB rays – an SPF 15 sunscreen blocks 93 per cent of UVB radiation, while SPF 30 blocks 97 per cent. SPF 50 provides 98 per cent protection, and SPF 100 stops 99 per cent of UVB rays from reaching the skin.

More concerning still, the Bundesamt für Strahlenschutz (BfS), Germany's Federal Office for Radiation Protection, reports a three per cent depletion of the stratospheric ozone layer at mid-latitudes in the northern hemisphere, particularly affecting Europe and two-thirds of Africa. This depletion has led to increased UV radiation levels – up seven per cent in winter and spring, and four per cent in summer and autumn.

Institutional challenges

The Kenya National Commission on Human Rights highlighted a crucial legislative gap in its 2022 report. The absence of explicit mention of albinism in the Persons with Disabilities Act (2003) creates ambiguity that hampers implementation efforts for support programs.

The situation is further complicated by findings from the Auditor-General's report on the council for the financial year ending June 30, 2022. While the albinism support program received an allocation of Sh98,808,912, physical inspections in February 2023 found that sunscreen lotions, lip balm, and after-sun lotions were out of stock in most hospitals.

The report noted, "There was no structured process for issuing skin care products through dispensing units. For instance, hospitals need to require prescriptions from dermatologists for clients to receive these products. Instead, beneficiaries were simply given products upon presenting a card identifying them as persons with albinism."

In 2009, Eugene Wamalwa, then Member of Parliament (MP) for Sabaot, presented a petition to Parliament on behalf of ASK, which was founded by Isaac Mwaura, the first MP and Senator in Kenya with albinism. The petition called for amendments to the Persons with Disabilities Act (2003) to explicitly include their needs.

Listen to Nation Reports Podcast: Women with albinism in Kenya.

Corporate response and research

The National Council for Persons with Disabilities currently procures only Nivea products through a competitive process. The tender documents outline strict specifications: active ingredients must not exceed six per cent for avobenzone, three per cent for dioxybenzone, and ten per cent for octocrylene.

When approached, via email, about developing specialised products for persons with albinism, Christina Hoberg from Beiersdorf AG's Corporate Communications responded with a measured tone: "We do not offer a product specifically dedicated to people with albinism. However, we do provide a broad portfolio of highly effective sun protection products suitable for all skin types, including sensitive skin." Beiersdorf AG is a German multinational company that manufactures skin-care products.

She noted their launch of Eucerin Actinic Control SPF 100 in 2021, describing it as a "dermatological product that combines a very high sun protection factor with excellent skin tolerance and a light texture."

Government response and advocacy

Kenya’s Ministry of Environment, Climate Change & Forestry claims to be addressing these concerns through various initiatives.

"Albinism is a disability... We are doing much, especially through the FLLoCA program," says Michael Okumu, deputy director for climate change at the ministry.

"We conduct participatory climate risk assessments at the ward level and develop county climate change action plans."

Former nominated MP Isaac Mwaura, who was instrumental in establishing the albinism support program, remains committed to the cause despite no longer being in Parliament.

"There was a time I actually pushed for the budget to be increased to about Sh400 million. It had been approved by the Budget Committee, but then it didn't go further," he reveals in a phone conversation. He adds that even in his new capacity, he will continue to advocate for the rights of persons with albinism.

While specific climate-related challenges affecting persons with albinism lack dedicated programs, the council conducts indirect activities that impact their well-being, such as raising awareness on self-protection and conducting regular cancer screenings for early detection, covering treatment costs.

Registration and accessibility barriers

A major hurdle in accessing support services lies in the registration system itself. Currently, registration must be done through eCitizen, an online platform for government services.

Daniel Shisia, a programs officer at the Albinism Society of Kenya (ASK), criticises this system as highly discriminatory: "How can someone in remote Tana River County, who has no phone and no knowledge of how to use a computer or internet-enabled device, register? This process only benefits those in urban areas."

The bigger issue, according to Daniel, is the lack of effective lobbying in Parliament for persons with albinism, a situation that worsened after the departure of Mwaura.

"The albinism program was established because of Isaac Mwaura. He advocated for funding allocation to the program. Even if we register a million of us, without someone in Parliament to fight for us, it will be just a waste of time. Nothing will change," he asserts.

The battle for access

While Kenya provides free protective products through public health facilities, the reality of accessing these essential items is far more complex than it appears on paper. Of the 9,729 individuals with albinism identified in the 2019 Census, only 3,800 are registered to receive these essential products through the National Council for Persons with Disabilities.

Pascalia's monthly visits to Mama Lucy Hospital, a Level 5 facility in Nairobi County, often end in disappointment.

"I went in July and August, but I didn't get the sunscreen," she recalls. Each trip costs her Sh100 in transport, money that could have gone toward her child's needs or her business.

"You'll be lucky to find the lip balm and aftersun," she adds. "Since the beginning of the year, I haven't received the aftersun at all. I've only gotten two bottles of sunscreen and one lip balm, yet I'm more vulnerable."

The support program, which began in 2011 with 2,500 beneficiaries, has grown slowly over 13 years. However, the budget has remained relatively static, with the Treasury allocating Sh100 million for the 2024/2025 financial year – an amount that must stretch to cover not just protective products, but also cancer screening, economic empowerment programs, scholarships, and awareness campaigns.

According to the United Nations Office for the Coordination of Humanitarian Affairs, 209 public health facilities in Kenya, including dispensaries, health centres, and Level 4 and Level 5 hospitals, distribute sunscreens. While Kenya and Tanzania provide free protective lotions through hospitals, many persons with albinism in other African countries find this an unaffordable luxury.

Alex Munyere, officer in charge of the albinism program at the National Council for Persons with Disabilities, emphasises that hospitals must establish better accountability systems to ensure easier access to these products, suggesting distribution through community health promoters.

While the government has not implemented a dedicated program to address climate - related challenges affecting persons with albinism, the council conducts vital activities that impact their well-being, including awareness campaigns on self-protection and regular cancer screenings with covered treatment costs.

The need for specialised solutions

ASK’s Daniel leans forward in his chair as he explains a crucial but often overlooked aspect of the challenge.

"Even though we all have albinism, our skins are different. Some apply sunscreen lotion but still get lesions repeatedly. We should have special lotions for persons with albinism that cater to our different skin types."

The Africa Albinism Network is currently campaigning for the World Health Organisation to reinstate sunscreen to the list of essential medicines.

"For individuals with albinism, sunscreen serves a crucial therapeutic purpose; it acts as a preventive measure that shields our skin from sun damage. We consider sunscreen an essential tool," explains Kwame Andrews Daklo, the network's advocacy manager.

His voice grows serious as he continues, "We have lost colleagues to skin cancer, a heart-breaking reality that highlights our vulnerability to climate change. As temperatures rise, so does our risk. Without sunscreen, we face a significant threat of developing skin cancer. Unfortunately, these sunscreen products can be prohibitively expensive and often out of reach for many individuals with albinism."

A future at risk

The challenge is particularly acute as climate change accelerates. In October 2023, Muluka-Anne Miti-Drummond, the UN Independent Expert on Albinism, highlighted this pressing issue, stating that "The profound impact of climate change on persons with albinism is one of the most overlooked aspects of the issue."

For women like Pascalia, Zipporah, and Janeread, each sunrise brings new challenges as they navigate life under an increasingly hostile sun. Their resilience is remarkable, but they shouldn't have to face these challenges alone. Their daily struggles highlight the urgent need for comprehensive support systems that recognise the unique challenges faced by persons with albinism in a warming world.

As the afternoon sun begins its descent over Jogoo Road, Pascalia carefully packs up her remaining inventory. Her skin tingles from the day's exposure, despite her best efforts at protection. Looking toward the setting sun, she voices a concern that echoes through her community.

"I don't want to develop skin cancer," she says firmly, her voice carrying the weight of countless difficult days. "I don't want the temperatures to increase any further. If they do, I'll be at greater risk of skin cancer. Let the government provide us with adequate sunscreen."

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