Albinism is still profoundly misunderstood — both socially and medically — and the aim of the month of September is to educate society on the condition. It’s a genetically inherited condition that happens worldwide, regardless of ethnicity or gender. Dr Nomphelo Gantsho weighs in.
1/ What causes albinism?
Albinism is caused by congenital hypopigmentation, explains Dr Gantsho. It’s a defect in the production of melanin, due to the dysfunction of pigment cells (melanocytes) in the skin, eyes, hair and ears.
2/ Are there any symptoms?
The primary symptoms can affect the skin, hair, eye colour and vision. The most obvious sign is a lighter skin tone. Hair colour can range in hue from white to brown. Those of African or Asian descent tend to have yellow, brown or reddish hair. Eye colour can also change with age and varies from very light blue to brown.
READ MORE: 3 Women Share What Finally Worked To Clear Up Their Eczema
3/ How is albinism inherited?
“Albinism occurs as a result of a form of gene mutation. The mutations interfere with the enzyme tyrosinase. These enzymes synthesise melanin from the amino acid tyrosine. Depending on the mutation, melanin production can either be slowed or completely stopped,” says Dr Gantsho. Most types of albinism are inherited in a recessive inheritance pattern when an individual receives faulty copies of a gene from the mother and father.
4/ How does albinism affect the skin?
Melanin protects the skin from the sun and albinos don’t have melanin. “People with albinism are very prone to sunburn and skin cancer (especially squamous cell carcinoma). Skin cancers are invasive and aggressive if under-treated. A few minutes of bright sunlight can cause serious sunburn. Prevention is better. Sunscreen is essential,” says Dr Gantsho.
READ MORE: This Is The Only Treatment For Hyperpigmentation You’ll Ever Need
These three women spoke to Women’s Health about how they celebrate their albinism and the lessons they’ve learnt.
1/ Thando Hopa
Thando is a lawyer, international model, writer and diversity activist. She was one of this year’s Miss South Africa judges, as well as the first African woman with albinism to grace the cover of international mag Vogue Portugal.
“Albinism should be celebrated, the way any other strand of humanity is celebrated,” says Thando. “The hierarchy that reinforces the worthiness of certain human bodies over others plays into the age-old cycle of unequal power dynamics and we never seem to learn from it as a society, be it race, gender, sexual orientation or in the specific case of albinism, colour. If we celebrate our differences [keeping] common humanity in mind, we may stop creating an ‘other’ and stop being an ‘other’ too,” says Thando.
Albinism taught her what being human taught her: “That, as people, we choose to standardise what the human appearance and experience should be – we call this normal. We have a history of describing what is different as abnormal, yet this process comes off as being in complete denial of the diversity embedded in human bodies and human experiences.”
READ MORE: Here’s Why The Top 16 Miss SA Contestants Say They’re Changing The Face Of Pageants
2/ Vuyokazi Nombewu
Vuyokazi is inspiring South Africans to reach their full potential and to become agents of change in their communities. Vuyokazi ran this year’s Sanlam Cape Town Marathon, hoping to qualify for 2020 Comrades Ultra Marathon.
As a long-distance runner, Vuyokazi experiences sunburn, which requires good-quality sunscreen. “My vision is very long. I’m always scared to fall, so I benefit from a guide runner when I need to chase good times. I aspire to qualify for Comrades 2020. I’m ready to train hard to achieve my goal,” she says.
Vuyokazi started running in 2014, and ran a marathon in 2015, because she wanted to build her confidence. In 2019, she joined Ocal Global, a movement that supports the needs of differently abled people. “I started thinking about how I contribute to raising awareness about the needs of people who are different and now I run for universal accessibility for all in our races,” says Vuyokazi. It takes courage to stand at the start line of a marathon of any race. “My reason is simple: I run to be seen. I run to discover my character. What’s your reason?” she says.
READ MORE: How Runner Gerda Steyn Won The Comrades And Beat The Record By More Than 10 Minutes
3/ Refilwe Modiselle
Refilwe is an activist, TV and radio host, MC, singer, actress and model. Soweto raised, she’s the country’s first professional fashion model with albinism. Refilwe says albinism has taught her strength, resilience, self-love and respect for people in general.
“It’s taught me the ability to take people as they are and embrace the qualities they possess from inside going out,” she says. Albinism has taught her to go beyond what people deem as limitations and to live life to the fullest – the way she wants to.
