At least three albinos have died of skin cancer in recent years, the Kisoro LC5 Councillor for People with Disabilities (PWDs), Baker Niyigaba has said.
Skin cancer is the biggest health risk for people with albinism.
Tumours usually develop in young people aged 25 to 35, who have no access to medical care and are forced to withstand sun exposure as they strive to support themselves.
People with albinism have a reduced amount of melanin, or no melanin at all. This can affect their colouring and their eyesight.
People with albinism can live health lives like the rest. However, they should limit the amount of time they spend outdoors due to sun exposure.
It is important for people with albinism to avoid sun damage to the skin and eyes by taking precautions such as wearing sunscreen or sunblock, hats, sunglasses and sun-protective clothing, or cosmetics.
It is advisable that they wear photophobia glasses as a relief from light sensitivity, but the glasses are costly and inaccessible on the local market. Albinism as a condition is synonymous with low intolerance to light, a situation which often results into intense pain.
Speaking to www.vomuhabura.com Niyigaba, said that cases of the deadly disease are increasing in Kisoro, mainly due to limited care and sensitisation on prevention.
Families with albinos, which are mainly in rural setting, struggle to provide their children and relatives with cosmetics, eye glasses and hats to minimise the risk.
Niyigaba says skin cancer has claimed the lives of three albinos, with the recent being a one Doreen Nyiramugisha from Bunagana Town Council who passed on last year.
He reports another one, Maxi Sibomana, from Nyakabande Sub County, who has been diagnosed with the disease, and currently frequents to Mulago National Referral Hospital for medical care.
However, Niyigaba says they have so far registered 37 albinos, with many coming from Busanza Sub County.
However, people with albinism in Kisoro deal with social isolation due to the stigma of the condition.
He notes that, “many albino children face stigma from both their relatives and peers, which deprives them of social life and basic education.”
Niyigaba adds, “Even when they go to school, other children isolate them. They can’t sit or eat with them. We however appreciate that Kisoro Demonstration Primary School receives and embraces such children.”
According to Niyigaba, parents should protect such children from direct sunlight and injury, since they take long to heal.
A Kabale-based NGO, Site for Community Services Program (SCOSP), with funding from Germany, has been the sole hope for children with albinism in Kisoro, through provision of basic support of eye glasses, hats and special cosmetics.
Hillary Gakwereri, the lay leader of Rutare Church of Uganda urged parents to pay special attention to children with albinism.
Gakwereri, who is also an albino, says that all children are a gift from God, and such children have special gifts from God like the rest.
As he grew up, Mr Gakwereri admits stigma and segregation, but says he kept his head high and is proud of serving under the Church of Uganda.
Despite the stigma, a few people with albinism try to hold on to their education dream.
The Kisoro Albino Organisation boasts to have one of them with a Bachelor’s Degree, and two others with a Diploma in Primary Education.
Last year, Kisoro ditrict joined the rest of the world to mark the International Albinism Awareness Day 2023, held under the theme “Inclusion is Strength.”
Speaking as the Chief Guest, the Kisoro District Vice Chairperson, Alex Ndayambaje, reiterated the district’s commitment to ensuring that individuals with albinism are not left behind. Ndayambaje revealed that they had presented the matter to the District Executive Committee and emphasized the need for the government to make services such as sunscreen lotion more accessible to people with albinism.
Kisoro LC5 Chairperson, Abel Bizimana tregrets that the District Council has not come up with any bilaw or ordinance, and goes by national policies and strategic plans.
Bizimana however observes that people with albinism deserve special interest, just like other special iinterest groups like the indegenous Batwa.
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