Focus on Saudi storytelling at Jordan’s Jerash Festival

RIYADH: Abrar Al-Othman is a young Saudi woman with a challenging and rare skin condition, but it hasn’t deterred her from thinking positively, becoming an author of three books, and inspiring and helping others.

Since birth, Al-Othman has been dealing with the symptoms of Epidermolysis bullosa, a rare condition that causes skin to blister easily in response to a minor injury, or heat, rubbing or scratching. As the condition develops, large blisters can form on the skin. It may last a few years and can cause serious problems.

No one else in her family suffers from the genetic condition, and it has been a great challenge for Al-Othman. She told Arab News: “My condition had a significant impact on me throughout many stages of my life, both because of its uncomfortable symptoms and because of how people looked at me and how I viewed society.”

Living with EB has caused her to face some harsh times. When she was ten, a bicycle accident resulted in a head injury that caused her to lose her hair permanently. She began wearing wigs at a young age.

Despite this, she has maintained a positive outlook on life and with the support of her family has been able to accept the challenges that come with her condition.

Armed with a contagious smile and optimistic attitude, Al-Othman took to social media as a platform to spread positivity and has written three books. In 2016, she wrote “There is Life in Every Heart,” which is “a variety of thoughts that I wrote years ago and compiled in it.”

She began sharing her work on Twitter in 2018 and received many encouraging comments from users, but for a while she preferred to remain anonymous.

Al-Othman continued: “After I published my first book, I was advised by someone to write a book about my condition, and I hesitated because I loved living behind the screen with no one knowing what I looked like, but I decided to take this brave step.”

In 2019, Al-Othman wrote her second book, “EB: My Other Half.” In this memoir-style work, she talked about “my story with illness since childhood, how I lived with it, some situations I went through … and among its pages are thoughts related to each stage.”

She was struck by readers’ comments and their outpouring of love, which led her to reveal her identity online. Having braved public scrutiny, Al-Othman began to appear in TV interviews, and as a result her life changed. She gained more than 81,000 followers on Instagram as well as the interest of prominent TV personalities.

Explaining the concept behind her third book, “There is One Soul Between Us,” which was published in 2021, she said: “(It) explores human emotions from my point of view. After each emotion, there is an empty page and a question concerning that emotion, and the reader is invited to express their perspective.”

I was advised by someone to write a book about my condition, and I hesitated because I loved living behind the screen with no one knowing what I looked like, but I decided to take this brave step.

Abrar Al-Othman, Saudi writer

She participated as an author in the Jeddah Book Fair where she met her readers and was able to connect more deeply with the community through her work. (NOTE: We’ll add the year this occurred when it’s clear, waiting for reporter’s feedback.)

Al-Othman’s journey has been anything but simple; she has had to deal with a lot of hardship, bullying, and has seen the dark and ugly side of society.

She recalled some of the positive experiences she had in school: “My friends at school helped open the water bottle or sharpen my pencil.”

Her friends would also help her do a variety of tasks, from carrying her backpack to helping her walk up the stairs.  

However, there were some really difficult experiences. “But I had really embarrassing moments. While taking a test, the pencil used to cut my skin and I bled on the paper so some of the teachers used to write for me.”

Al-Othman explained that sometimes she was embarrassed to eat at school because it would hurt her throat and so she would only drink water.

Things became more difficult for Al-Othman after secondary school; she became the target of bullies and other students would avoid sitting next to her due to her condition.

Speaking about the isolation this created, she said: “I was bullied to the point that I didn’t go to school for many days and when I was in college, I had no friends.”

Now, after enduring hardships, Al-Othman has become a beacon for others. She refers to herself as the “EB butterfly,” and has established a group for mothers of children with the same disease, to whom she offers a wealth of guidance.

She explained: “Every mother supports the other with advice on how to care for the child and (shares) experiences, whether in hospitals or treatments, and each one in accordance with their personal knowledge of the disease. A dermatologist is also present.”