By Pauline Odhiambo
Zoey Seboe was in primary school when a bully yanked off the scarf covering her head, revealing what looked like burn marks stretching down to the nape of her neck and beyond.
The 24-year-old doesn't recall if that was the moment she reconciled to the idea of being comfortable in her skin rather than giving in to society-induced stigma.
By the time she was in Grade 12, Zoey was confident enough to have made a fashion statement out of her head covering, using a weave instead of her regular turbans "for a change".
At 22, she was strutting the stage at the 2022 Miss South Africa beauty pageant.
Zoey's story is remarkable because she was born with lamellar ichthyosis, a rare genetic dermatological condition that appears at birth and continues throughout life.
The medical explanation is that these large, scaly patches occur when the body creates skin cells at an abnormal rate and does not shed dead skin fast enough.
For all her self-belief and poise, Zoey acknowledges it hasn't been easy living with the condition, which decreases the skin's ability to sweat and makes it sensitive to heat.
To protect herself from the elements, she often wears long-sleeved clothing and other outfits that cover her completely.
"Having this skin disease feels 'normal' to me in the sense that I don't pay much attention to it," she tells TRT Afrika.
"Outwardly, I may appear different from others, but the condition doesn't represent who I am."
0.0005% occurrence
According to the World Health Organisation, lamellar ichthyosis affects at least 1 in 200,000 people worldwide,
"Skin regenerates from the bottom layers upwards through cornification, where the dead skin cells at the top come off with daily washing to reveal the new skin underneath.
Ichthyosis happens when the old skin doesn't come off," explains Dr Lerato Masemola, a specialist in aesthetics medicines based in South Africa.
Although the condition has no cure, daily exfoliation and moisturising can prevent dryness.
Resurfacing creams increase the skin turnover rate.
"Depending on the weather, I can moisturise my skin up to six times a day in the cooler months and eight times a day in the summer," says Zoey.
"In addition to using my prescribed medication, I have to use sunscreen to avoid itching and redness."
People with ichthyosis often experience hair loss due to scaling, which makes hair growth difficult.
"In the olden days, many African women wore turbans or head wraps as a status symbol and also to protect their hair.
I wear turbans because I suffer from hair loss due to the condition. Using a turban is the only way for me to feel comfortable naturally," Zoey tells TRT Afrika.
Learning to accept
Beyond the bullying she was subjected to, Zoey has happy memories of school.
"During my final year of high school, I didn't always have time to clean my turbans because of class work. That's when I decided to try wearing a weave and received compliments from friends.
More importantly, I thought I looked good," recalls the young woman.
"It wasn't the most comfortable hairstyle one could choose, but it was nice to have it on at the time."
As the years went by, Zoey grew in confidence about her looks. So much so that she aspired to enter the Miss South Africa contest, even though she couldn't picture herself on stage looking different from everyone else.
"I was inspired to enrol after learning that another woman who looked different was competing. I thought, 'If she can do it, I can too'," she says.
Much to her delight, Zoey made it to the shortlist, with news of her presence in the pageant eliciting mixed reactions.
"There was some positive feedback, with people saying I had inspired them. The uncharitable ones said I looked like a snake. So many people asked, ‘How can South Africa accept her application? How can she do this?' It was interesting to see how people reacted to something that they knew little about."
Being among the top 30 contestants galvanised her resolve to showcase a different kind of beauty.
"I knew the possibility of winning was slim, but I was still happy because my presence in the contest showed how society is gradually evolving to be more inclusive and accepting," says Zoey.
Corporate dreams
Although she did not win the pageant, the experience also strengthened her motivation to study law and champion the cause of a more inclusive society.
"I want to become a corporate lawyer, and I believe society is steadily changing to be more accepting of people who look like me or have other similar conditions.
I am mostly curious about how my turban would be received within the corporate space!" muses Zoey.
A strong support system is essential for people living with ichthyosis, and Zoey acknowledges that she has been fortunate to have family and friends backing her every step of the way.
The one thing she would advise everyone battling a difficult health condition like hers is to avoid self-stigmatisation.
"Make however you look like your currency to navigate this society. And believe in yourself," she says.
