Miss South Africa finalist Zoey Seboe on Living with the Rare Skin Condition Lamellar Ichthyosis
By: Qhama Dayile
The modeling industry is often hard to break into, with high and often unrealistic beauty standards and there's pressure to look a certain way.
But she is not phased by any of that and is doing things her way.
Miss South Africa Top 30 finalist Zoey Seboe (22) entered the pageant to educate people about her rare skin condition and to motivate those who feel cast aside by society.
“I believe I am here for a purpose,” she tells Drum.
Zoey was born with lamellar ichthyosis, a rare skin condition where the body creates skin cells at a normal rate, however, they do not separate from each other at the surface, the way they should, and the body does not shed the skin fast enough. This causes brown scales to form.
When some people see her for the first time, they stare, or uncomfortably look away. Some have gone as far as saying she has been bewitched. Some fall in love with her confidence and willingness to teach others about her condition.
“There are misconceptions about my condition. Someone said, ‘You are like this because of the sins of your parents'. I will never forget this; it was said by an adult. I was shocked,” she says.
“Someone else said, it was a curse on my family. There are many African cultural stereotypes like witchcraft, from people who have tried to isolate me for looking different. In general, people assume these are burn marks or some type of snakeskin.”
The comments and lack of knowledge used to affect her in the beginning, but she learned that knowledge is power, and she started teaching people about her condition.
“I try not to go on Twitter too much where people are hurtful. But before I exposed myself to the world, my family did the groundwork and protected me. I went out knowing who I am,” she says.
“My condition is just something that affects my bloodstream and a gene mutation that hasn’t aligned properly. But then that I am living beautifully, trying to inspire young people,” she says.
“Some people have died from the severe case of the condition. I am just grateful for life. I am not suffering from any kidney or asthma problems which are associated with this condition,” she says.
“Some people can’t wear certain clothes because their skin peels off. I can still wear any texture clothes.”
She was born with lamellar ichthyosis. She was five years old when she noticed she was different and her family and community protected her from judgment.
“They didn’t make me feel different until I was 10 years old when people outside started recommending and suggesting remedies and giving advice on what I can use for my skin. Some said I needed to go to church, to a certain doctor or prophet, and some I tried because I also learning myself,” she says.
“When I was in grade 12 and early first year, I started doing research on my own. I was self-discovering.”
Her skin care routine is strict but not far different from many people.
“I cannot sit in the sun for too long, it burns my skin. I wear long sleeves always, not because of the confidence but to avoid being burned. Some people have wet lamellar ichthyosis, I have dry lamellar ichthyosis which does not stick to clothes,” she says.
“I wake up, wash face with cold water. I wash my whole body with warm, saltwater and then E45 with Vaseline to moisturize.”
She has seen doctors in private and in government, desperate to find a cure but later learned her condition is incurable.
“I stopped going to doctors when I was in Grade 12. I had spent a lot of time seeking medical help and I needed to focus on my studies. We spent so much money and time on private doctors and specialists before I could accept that I needed to live a full life with my condition. There is no cure, and I am putting myself out there, not to ask for help but to educate people and to show them that anything is possible if you set your mind to it.”
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She decided to enter Miss SA this year after many years of wanting to be a model.
“I needed to work on myself first. I was modeling already but my modeling career was not visible. I was not getting many opportunities. So, I would shoot my own images and use them on social media. I would attend castings but never get any jobs, but I eventually I built the courage to step out of my comfort zone and follow my dreams by entering a big contest like Miss SA. I was motivated when I saw Jeyza Kaelani on social media. She is a model and an influencer and model who had the same condition as mine,” she says.
“My aunt sent me the picture of her and asked said why not go for it. I saw how confident she was, and I always wanted to be a model since high school but I was not confident enough or strong enough. I was comfortable with my community and friends who had accepted me, I was not ready to go out there to share my story,” she says.
Born and raised in Joburg, she is the third child out of four and studying for a Bachelor of Commerce in Law and doing her final year. Zoey’s mission is to educate people in her condition. None of her siblings have the skin condition and she and her family have learned about it together.
“They say knowledge is power, once people become aware of the condition and other rare skin conditions, there will be less discrimination and more respect and love for others.”
Zoey looks up to model Thando Hopa, who lives with albinism.
“She is an inspiration to me. Her commitment to diversity and inclusivity, how she lived and grew up with albinism and proved that anything is possible. She is opening up space for girls like me.”
Zoey adds she wants to work with organizations that tackle issues related to skin.
“I want to speak to young girls and make them aware they are worthy of seeing themselves in any space. I wish to work with organizations that deal with unique skin conditions and be there for my community.”