Brave teen's rare condition causes her face to fall apart

28 October 2023 , 11:44

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Abigail Marin was diagnosed with a facial tumour when she was six years old (Image: mediadrumimages / @braveartist2005)

A teenager has had more than 100 operations due to a rare condition which causes her face to fall apart.

Abigail Marin was diagnosed with a facial tumour when she was just six years old. Doctors operated on the young girl a number of times but the surgeries only led to more problems.

Abigail's face was not able to function properly without constant medical interventions to stop it from falling apart. The 18-year-old eventually had a 17.5 hour operation in 2022 to create optimum functionality in her face, and for the rest of her life she will have to have small operations to maintain the function in her face

"We all thought that everything would go back to normal but unfortunately it didn't," the student from London said. "Because of all the damage my tumour caused it meant that my face was not able to function without constant medical interventions."

Abigail explained that initially her operations were to save her life, but now she continues to have operations to stop her face falling apart. "I've needed over 100 operations on my face," she said. "I had surgery for all different reasons but at the beginning they were mostly to remove the tumour and save my life.

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"After the tumour was removed, my face was falling apart so all my surgeons over the years have had to operate to keep my face from falling apart. In May 2022 I had a 17.5 hour operation to give me as much function of my face back as possible. For the rest of my life I will have to have small operations to maintain optimal function in my face."

Abigail when she was younger with oxygen and nurses surrounding her (mediadrumimages / @braveartist2005)

During school Abigail felt isolated by her peers due to her visible difference. "I did have people in my school actively avoid me because they were scared of my appearance as well as whispering and laughing with each other about me," she said. "Especially when I was younger I had a massive patch of infection on my face which people would just assume was a burn.

"Whenever you're different from other people it makes you feel lonely or upset which is a natural reaction. Being a child with a facial difference I became very withdrawn whilst in school and certain situations. As a child, it was really confusing. I had been looking like everyone in my school and suddenly I didn't."

This led to Abigail being diagnosed with selective mutism. "Like anyone in my situation I did struggle and find all this quite hard to manage which resulted in me becoming a selective mute," she said.

"I was therefore diagnosed with selective mutism which is an extreme anxiety disorder that manifests as a social phobia. Lots of people with selective mutism are triggered by a traumatic event, which for me was all the chaos my diagnosis had caused."

Selective mutism is an anxiety disorder where a person is unable to speak in certain social situations, such as with classmates at school or to relatives they do not see very often.

Abigail said that despite her physical changes being the most visible, her psychological changes had the most impact. "My parents didn't know what to do, as there aren't any parenting books about this, so they asked a psychologist for help, as well as tapping into a fabulous charity called Changing Faces," she said. "My physical appearance keeps changing due to surgery but my changes were more psychological.

Doctors operated on Abigail a number of times but the surgeries only led to more problems (mediadrumimages / @braveartist2005)

Abigail, now 18, will have to have small operations for the rest of her life to maintain optimal function in her face (mediadrumimages / @braveartist2005)

"Feeling pretty was a big struggle for me. I used to look at all my peers and the actors around me and feel so upset at the fact my tumour robbed me of that feeling of traditional beauty, I even used to hate looking at my face in the mirror especially when I was post surgery. At the end of the day I can't drastically change what I look like so I had to find a way to change my mindset towards my visible difference.

"Like most people I'd love to look like Angelina Jolie or Zendaya but that's unrealistic and I had to adapt and see the beauty in my what I call 'abstract face'."

Despite what she has gone through, Abigail believes it has made her stronger. "Most of the time I feel proud, feelings are complicated but most of the time I'm proud of my achievements and the person I'm becoming," she said.

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"I had art as my way of expressing my pain which for me really helped me get through everything, I would say to anyone going through bullying, make sure they have an outlet. I like to think that through my life experiences I have grown stronger and more sensitive from every hard and traumatic experience I went through and will continue to go through."

Rebecca Chitolie