Marion Karawia (35) suffers from a rare facial condition that causes her eye to “pop” when she chews. This unusual symptom was noticed by her parents for the first time when she was only five years old, she writes. Doctors explained the involuntary speech with the diagnosis of Marcus Gunn Syndrome (MGS), in which, due to the connection of nerves, jaw movements cause simultaneous lifting of the left eyelid.
“Nobody I knew had it. I’m the only one in my family. To this day, aside from the people I’ve met through sharing my story, I’ve never met anyone with MGS. It took me a long time to come to terms with it, about 15 years. Fortunately, I wasn’t bullied, but it still bothered me. I always felt different. It affected not only my physical but also my mental health. It was really hard at times,” she explained about her life journey with the congenital disorder.
Marion admitted that growing up with this defect undermined her self-esteem. “As a teenage girl, I had trouble coping. When I move my jaw, my eyelid opens and my eye bulges. It was especially difficult when dating or making new friends. I tried to somehow hide it or avoid eating in public,” admitted.
“I could have had surgery, but as it doesn’t cause me any pain or affect my vision, it would be more of a cosmetic solution. I realized that I don’t want and don’t need to feel the need to ‘fix myself’ and make such a big deal out of it,” explained the now successful co-founder of a skin care company. She is now happily married to her husband Karim (34), who, according to her, never paid much attention to her syndrome.
Marion began sharing her journey on social media under the moniker @marionsworldd to raise awareness and boost the confidence of others who may be suffering from MGS. “I am sharing my story to help those who have been bullied, shamed or insecure because of MGS or any physical condition. You are visible, you are special and you are loved. I love my MGS, it is a part of me and always will be,” she concluded.
