Growing up as a little girl in rural Transkei in Eastern Cape, Thandiswa Jack (not her real name), who has albinism, loved to play outdoors and basked in the sun whenever she felt like it.
“We used to run around chasing soccer balls and playing all the other fun games with the kids from my village.
“My parents used to reprimand me and my sister (who is also an albino) about exposing ourselves in the sun, but I never used to pay attention in fact I didn’t care.
"I was very naughty and just wanted to be outside with other kids,” she said.
As a teenager, Jack developed dark spots on her face, which later became sores. When she repeatedly went to a state clinics and a local pharmacy, she would be given a cream to apply to the sores.
It was only after her family moved to Philippi five years ago that the then 19-year-old got a proper diagnosis when a GP referred her to Groote Schuur Hospital.
“I was told the most shattering news... it turned out that the sores that I was treating with skin creams were actually skin cancer. My world came crashing down, but it was too late.”
This week doctors from Stellenbosch University’s dermatology department visited Athlone School for the Blind in Bellville, where Jack is a pupil, to raise awareness about skin cancer and donate sponsored sunscreen ahead of World Cancer Day yesterday.
About 25% of the school’s pupils suffer from albinism.
People with albinism are advised to protect themselves from the sun as they are at most risk of developing skin cancer, about 1000 times more likely to get it compared to the general population.
But for many people living with albinism, this information comes too late.
Zama Shozi from the Western Cape Albinism and Hypo-pigment Foundation, an NGO which raises awareness about albinism, says even though 25% of people with albinism are at risk of developing skin cancer, there is still a lot of ignorance concerning this genetic condition.
Her organisation travels to different parts of Africa to raise awareness about this often stigmatised disorder.
“A lot of people still live in the dark when it comes to albinism and the risk of cancer. Instead of wanting to know more about the disease, a lot of people in our communities focus on the negative often mocking those who live with this condition.
"There is still a lot of stigma associated with albinism. People with this condition are called names such as isishawa (curse) or inkawu (monkey). I was called those names because I’m also an albino.
"So there is still a lot of ignorance and misinformation about albinism throughout Africa, but it’s getting better these days compared to what it was 15-20 years ago,” said Shozi.
The Western Cape Albinism Hypo-pigment Foundation was registered four years ago to address the interests of people living with albinism, create awareness and give people living with the condition skills so they don’t become dependent on social grants.
Jack said she had been ignorant of the link between albinism and cancer.
“Playing in the sun was never an issue for me. Even though my parents discouraged me from exposing myself in the sun, I think they were more worried about my eyesight rather than skin cancer.
"They were not very informed themselves,” she said.
She had to have large patches of her facial skin removed as part of cancer treatment and is in remission following surgery and radiation.
Dr Willie Visser, head of the dermatology division at Stellenbosch University and Tygerberg Hospital, said that while white South Africans generally presented with skin cancer only later in life, after the age of 60, most albinos presented with skin cancer as young as 20.
He blamed the high prevalence of cancer primarily on sun exposure.
While most people have natural sun block called melanin, albinos have no protection at all as they don’t produce melanin.
Albinism can affect all races, but scientists believe some races have a much higher prevalence than others. Black people are more likely to have albinism.
“Because of the lack of melanin, which acts as a physical protective barrier to sunlight, dangerous sun rays penetrate into the deeper layers of their skin causing damage to their cells,”said Visser.
To protect against the harsh rays of the sun, people with albinism are advised to apply sunscreen of a higher sun protection factor (SPF) number.
Visser said that while sun lotions had different strengths, from SPF 15 upwards, ideally people should use the SPF 50, which provides good sun protection.
He said that while government health facilities were required to provide sunblock lotion to albinos on a monthly basis, this was not always done due to various problems such as stock-outs and lack of knowledge on the part of health workers.
Dr Riette Burger, an oncologist at Tygerberg Hospital and Stellenbosch University, said that while albinos had a much higher risk of skin cancer, the good news was that if detected early, skin cancer could easily be cured by performing surgery.
“We only do radiation when the cancer has already spread and goes deeper into the skin,” she said.