John Waluke, 41, has lived with albinism since 1994. He recalls how he was isolated from a regular school, forcing him to transfer to a special one. 

He says living with the skin condition has been a daily negotiation of identity, access, and dignity in a society that often misunderstands or stigmatises the differences. 

Waluke has been facing vision challenges that affect his mobility, especially in busy urban spaces. 

“I can’t see objects from far away,” he explains, noting that he relies on expensive spectacles and sometimes even braille materials in school.  

He also mentions that his skin lacks melanin and is extremely sensitive to sunlight.  

“Sunburns are painful, and sunscreen can be expensive,” he adds. While government provisions for sunscreen help, Waluke notes that there can be misunderstandings about its purpose in public health facilities.  

“Some people think our lotion is for the sick,” he says.  

He manages these challenges by wearing protective clothing, applying sunscreen regularly, and staying indoors when necessary.  

Poor eyesight, sunlight sensitivity 

To further combat misinformation, Waluke engages in community sensitisation, often using media platforms. He recounts instances where children shout at him in the streets as if he were an animal.

While he often ignores them, he sometimes takes the opportunity to educate them about albinism. 

He notes that he has received support from both the state and compassionate individuals. Organisations like Dr Choks have donated spectacles, while the National Council for Persons with Disabilities has provided sun-protective clothing.

These resources, along with tax exemptions, have significantly improved his quality of life. Interestingly, Waluke views his condition as a source of unexpected advantages.  

“My skin colour gives me a form of privilege,” he says with a smile. At work, he feels uniquely respected, and even within his family, he feels valued. “My wife even loves me partly because of my uniqueness,” he adds.  

As the world observed World Albinism Awareness Day recently, voices like that of John Waluke offered a powerful reminder of the realities behind the statistics surrounding this condition.  

Duncan Mecha, 24, a student at a college in Kisii County, recalls noticing his pale skin and white hair while growing up, but he didn’t understand why he looked different from his classmates. Although he enjoys playing football at school, his condition makes it challenging due to poor eyesight and sensitivity to sunlight.  

Mecha mentions that some classmates tease him, and others assume he cannot perform well academically or physically, which makes him feel isolated and insecure.  

“Sometimes I feel invisible, like people only see my albinism, not me. It’s tough when others don’t believe I can succeed,” he says.  

Despite these challenges, Mecha works hard to excel in his studies. He finds support in a few close friends and some teachers who encourage him to persevere. He has developed a passion for psychology and dreams of helping others who face discrimination or disabilities.  

He has also learnt to use a white cane (a walking stick used by the visually impaired) to navigate safely and protect himself from the harsh sun. Recently, Mecha organised a training session at the college to educate others about albinism.  

“I informed them about the myths surrounding it and the importance of inclusion and respect,” he remarks, adding that he wanted the students to understand that persons with disabilities (PWDs) are just like anyone else.  

“We have dreams, talents, and the right to be treated with dignity.”  

Early eye care 

Dr Ronald Nyamamba, a comprehensive ophthalmologist and cataract surgeon at Kisii Teaching and Referral Hospital (KTRH), emphasises that early eye care is crucial in helping people with albinism lead better lives. 

Many patients with albinism experience issues such as photophobia (sensitivity to light), blurry vision, and difficulty seeing objects at certain distances. These challenges can impact their ability to read, work, or walk safely.  

To help manage these issues, Dr Nyamamba recommends using special glasses, such as photochromic lenses, and scheduling regular eye checkups. “Managing eye problems early prevents them from worsening,” he says.  

He emphasises the importance of educating both patients and healthcare workers. During the World Albinism Awareness Week, Nyamamba took the opportunity to teach students and staff that albinism affects not only the skin but also the eyes.  

He also urges the government and donors to provide free or subsidised spectacles, sunscreen, hats, and sunglasses to enhance the quality of life for individuals with albinism.  

James Esekon, the Kisii County Disability Services Officer, understands the deep medical and social challenges faced by individuals with albinism.

He notes that their condition, affecting both skin and sight, requires constant attention, as neglect can have serious consequences.  

“Visual problems are common,” Esekon explains, highlighting that both ocular and oculocutaneous albinism can impair eyesight. Issues such as low visual acuity, photosensitivity, involuntary eye movements (nystagmus), and strabismus can make daily life more difficult for many. He adds that while vision problems are significant, it is the skin that often suffers the most.  

“Without melanin, the skin is vulnerable to sunburn, premature ageing, and in many cases, skin cancer,” he states. He stresses that sun protection is not optional; it is a life-saving necessity. 

According to him, early diagnosis and guidance, especially for children, can prevent irreversible damage.  

“Once diagnosed, patients can learn how to protect their skin, reducing the risk of cancer,” he explains. Sunscreens, hats, long sleeves, and avoiding the sun during peak hours are crucial.  

Unfortunately, in many areas, sunscreen is out of stock or unavailable, leaving patients vulnerable. He adds that children often don’t understand why they are different. This is where parents play a vital role in providing guidance, protection, and reassurance.  

Families are encouraged to offer both physical protection and psychological support, as many individuals with albinism face issues like low self-esteem, isolation, and even depression. 

Dangerous myths, misconceptions  

Esekon notes that in some sub-counties, sunscreen is not available. Children with albinism are placed in regular schools without specialised materials, making learning challenging.

Additionally, many individuals with albinism are unemployed, and dangerous myths still surround them, causing fear for their safety.  

“We recently lost a university student with albinism from Kisii,” he says somberly, referencing a case of abduction and murder. “This shouldn’t happen in 2025.”  

Still, he sees hope in data. Current records can help allocate sunscreen, budget for assistive items like hats and protective clothing, and even influence national policy.  

Furthermore, this data enables the National Council for Persons with Disabilities (NCPWD) to offer scholarships and register individuals with albinism for official support programs. However, he insists that more must be done.  

“We need regular skin cancer screenings, stricter enforcement of protection laws, and continued public awareness,” he emphasises, adding that the community must understand that individuals with albinism need protection, dignity, and equal opportunities.  

Edna Machuma, a medical social worker at KTRH, points out that albinism remains misunderstood and stigmatised in Kisii County.

She notes that social challenges include discrimination, poor healthcare access, and cultural myths that isolate affected individuals. 

“Children are often bullied or hidden, lacking educational support,” she explains, adding that adults face job discrimination.  

As social workers, Machuma says they provide counselling to families, offer referrals, and promote awareness.