Follow Vogue Arabia

Saudi Author Abrar Alothman on Living with a Rare Genetic Disease and Inspiring Empathy in Others

Saudi author Abrar Alothman is more than the skin she inhabits. Living with a rare genetic disease, she is finding strength in her voice and inspiring empathy in others.

Dress, Sportmax. Photo: Amer Mohamad

Abrar AlOthman knows that all eyes are on her wherever she is. People recognize her as a social media influencer as she saunters through the first edition of Hai Vogue in the historic district of Al Balad, Jeddah. Many of her videos on Instagram and TikTok have gone viral. Her style is short and personal; she looks straight at the camera and shares pithy and raw messages that are universal—about self-love and how to handle setbacks. She reminds followers that there are good days and bad days—and she doesn’t shy away from speaking about either.

Dress, Sara Mrad. Photo: Amer Mohamad

“It’s hard for me to talk about myself but I was born with this disease that is all over my skin. It’s painful all the time,” she begins. “It is like a burn but without the heat—these ‘bubbles,’ they just appear on their own. Large blisters get infected even inside my body—even my throat. I find it hard to swallow food. Also, this is a wig and not my real hair. I lost my hair due to this disease,” she says matter of factly, motioning to the blonde wig framing her face and covered with a scarf.

Top, skirt, headpiece, Makram Marzuki. Photo: Amer Mohamad

Epidermolysis bullosa or EB, is a rare genetic skin disease, occurring in an estimated one of 50,000 births according to the National Organization for Rare Disorders. It creates slow-healing wounds on the skin. In essence, her body attacks the collagen in her skin. She has had this since birth and she learned to live with the constant tourniquets wrapped around various body parts. Sometimes, these bubbles bleed into her clothes and bedsheets. She can’t wear white for fear of staining. According to Mayo Clinic, “Epidermolysis bullosa has no cure, but mild forms may improve with age. Treatment focuses on caring for blisters and preventing new ones.”

Dress, Sportmax. Photo: Amer Mohamad

AlOthman understands that she is more than what plagues her skin. The 30-year-old knows her face tells a thousand stories and she’s ready to start narrating them. “Watching shows was my refuge,” she explains, adding that her goal for 2024 and beyond is to become a trusted member of the media. She worked as a special correspondent at some networks in the past but it was a fleeting gig. “I’m a bit shy, I feel like I’m almost waiting for the opportunity to come to me directly and fall on my lap. I’ve had so many great interactions with people I admire on the screen and I’ve been able to meet them in real life, but I never had the courage to look them in the eyes and ask them to collaborate directly,” she says. “I think I need to become more courageous in that way. We all need help sometimes. It is wrong that I’m waiting for things to just come to me. I need to also try to seek them.”

Dress, Khawla Alaiban. Photo: Amer Mohamad

If she is reserved, her childhood experiences undoubtedly played a hand in forming her character. “I had to switch schools. Nobody wanted to sit with me during recess. Nobody wanted to sit at the desk next to me. They were afraid to shake my hand, or if they did, they would only do it with their fingertips and then immediately wipe their hands. They did not stand too close to me,” she recalls. When she became internet famous, many of those childhood bullies slid into her DMs asking for forgiveness. “Of course, I was able to forgive them,” she nods.

Photo: Amer Mohamad

AlOthman, who has since written several books related to her experiences, explains that her constant companion throughout her life has been her own words and her own stories. “I’d have my notebook in my school bag and write in the car on my way home. I’d write about my day, and what happened between my sister and I. A few years ago, I found those notebooks and opened them up. What I learned is that writing has always been something that has given me solace,” she smiles.

Originally published in the March 2024 issue of Vogue Arabia

Style: Mohammad Hazem Rezq
Fashion director: Amine Jreissati
Hair: Ayoola Akinde
Makeup: Isabelle Reda
Nails: Jerra Jugalbot from SOAK
Photography assistant: Shaan Mahroof
Fashion assistant: Neymat Master
Producer: Sam Allison

View All
Vogue Collection