Marion Karawia, a 35-year-old woman from Los Angeles, has shared her experiences living with a rare facial condition known as Marcus Gunn Syndrome (MGS). Diagnosed at the age of five, Marion’s left eyelid lifts dramatically whenever she chews, causing her eye to appear bulged. Despite the challenges it posed throughout her life, she has decided against surgery to correct the condition, embracing it instead as a unique aspect of her identity.
Marion’s journey with MGS began in childhood when her parents noticed her eye bulging during meals. After consulting a doctor, they learned that the syndrome results from nerve rewiring that links jaw movement to eyelid motion. While growing up, Marion struggled with her self-esteem, particularly during social interactions such as making new friends at school or going on dates.
She recalls, “As a girl growing up in my teens it was tough to navigate. When I move my jaw, it looks like my eye is bulging, but it is just my eyelid moving dramatically.” This noticeable feature often made her feel self-conscious, leading her to avoid eating in front of others or attempt to hide her condition.
Despite the option for cosmetic surgery, Marion chose to reject it. “I realized that I didn’t want to or have to feel the need that I needed to ‘fix’ myself,” she explained. “I have grown, I am who I am, and I love it.” She emphasized that since the condition does not cause pain or vision issues, focusing on its cosmetic aspects would not be worthwhile.
Living with MGS has not been without its difficulties. “I always felt I was different,” Marion said, reflecting on her teenage years. She noted that, apart from her family, she has not encountered anyone else with the syndrome. “To this day, other than the people whom I have met through sharing my story, I have never bumped into someone with MGS.”
Marion’s social life was particularly affected, especially during dates. “If I were to get food with them, I would specifically try and not look down whilst chewing,” she recalled. This behavior stemmed from her desire to conceal her condition, which added stress to what should have been enjoyable moments.
Today, Marion is happily married to her husband, Karim, age 34, who has been incredibly supportive. She shared, “I’ve asked him, ‘have you ever noticed?’ and he said, ‘Yeah, I did, but never thought anything of it.'” His acceptance has bolstered her confidence and provided her with the encouragement needed to embrace her uniqueness.
In an effort to raise awareness about MGS and help others who may feel similarly isolated, Marion has taken to social media, sharing her story under the handle marionsworldd. She aims to inspire those who may be facing bullying, embarrassment, or insecurity due to their physical conditions. “It’s crazy to think that something as simple as eating can have such an impact on people’s lives,” she stated.
Marion’s message is one of acceptance and self-love. “You are seen, you are special, and you are loved,” she expressed. “I love my MGS; it is a part of me and it always will be.” Through her advocacy, she hopes to create a supportive community for those living with similar challenges, encouraging them to embrace their own stories and identities.
