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rare disease day 2025: educating and advocating for people living with facial differences
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kelsey ferrill works with about face to create a safe and inclusive society for people living with facial differences.
kelsey ferrill
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kelsey ferrill was born with moebius syndrome, a rare congenital neurological condition that affects the facial nerves. all her life, kelsey has faced various barriers due to her condition and its effects on facial and speech differences, simply because people don’t know of or understand her condition and what it means for those who have it.
because kelsey looks different, she has been subject to stares from strangers and comments and questions about her outward appearance. she notes that “having people stare” can be challenging to deal with, but it’s not just about the looks or remarks she receives that makes living with moebius syndrome difficult.
“the worst thing is people making assumptions about your feelings or assuming that they have an intellectual disability as well, and that is something that not only myself but a lot of people with not only moebius syndrome but facial differences in general, that’s something that people will experience.”
“it’s the misconceptions,” she continued.
kelsey, who has a bachelor of communications and a master of intercultural and international communications, has decided to use her education and personal experience with moebius syndrome to spread awareness and educate people so that others with facial differences can experience life in a more welcoming society.
“advocacy is super important for me because i know firsthand what it’s like to live every day with a facial difference, going out in public, going to job interviews, going to anything, and just feeling like people are staring,” she said. “they just don’t understand.”
living with moebius syndrome
the difficulty of living with facial differences has affected kelsey in various areas of her life. from strangers to healthcare providers, she has had to deal with feeling singled out consistently since she was old enough to notice.
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but it’s not just the visual barriers that affect kelsey. it’s people not knowing what moebius syndrome is and what it really means to have this rare disease. she recalls going to see doctors who had never heard of the condition and not knowing how to help her simply because they didn’t have the knowledge to do so.
“for example, my eye surgeon specialist, i had a couple of eye surgeries that did not resolve the issue that we were trying to resolve, and her response was, ‘i honestly don’t know, you’re a mystery because what we have done theoretically should have worked,” she said. “so, it’s being a medical mystery.”
kelsey has also had to contend with other ailments, including moderate to severe hearing loss in her left ear, leading to difficulties with communication with others and increased feelings of isolation.
“especially when you walk into a store, or you walk in anywhere, and someone’s a distance away, and they say something to you, just not being able to decipher what they’re saying and kind of having to smile and laugh and hope it’s not a question,” she said.
she continued, “it’s things like that. not being able to hear normal things, or people talking, not being able to communicate effectively.”
being unable to communicate effectively was a significant challenge for kelsey. so, when she was nominated to receive hearing aids that many people cannot afford through the campaign for better hearing, a global initiative designed to make hearing aids and hearing healthcare more accessible, she could finally take in the sounds of the world around her.
“i had just gone my whole life without hearing these sounds, and suddenly i heard it,” she said. “it was just a very surreal experience.”
she continued, “the cost is a huge barrier, so the campaign for better hearing, it eliminates the barrier and gives people access to something that they would not have had access to … it’s something that has the ability to really improve someone’s life.”
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she hopes that the gift she received will soon be attainable for others who experience hearing loss and the isolation that goes hand-in-hand with it.
professional and personal advocacy for change
kelsey is currently the communications officer for about face, a charity organization that provides support for people living with facial differences and their families and spreads awareness and education to help others better understand what it means to live with facial differences.
through her work, she hopes to change how society views people with conditions that cause facial differences in a meaningful way because, as it stands, the barriers people experience can be challenging to cope with.
“it’s pervasive into every facet of life, so finding a job can be really difficult, going to school, and just going out in public a lot of the time,” she said.
kelsey and the team at about face have created campaigns to train people in various settings, from summer camps to professional workplaces, so that people of all ages become more aware and well-versed in what facial differences are and what they are not.
“another thing is that people, if you have a facial difference, you might not feel comfortable going to a recreation program, for example, or a fitness class, or things like that for fear of not feeling safe in that environment,” she said. “we really focus on education and advocacy and speaking out about these things and the barriers that people with facial differences experience.”
one barrier in particular, isolation, can be hard to escape for people living with facial differences, and that can severely impact a person’s ability to find their place in the world.
“i was 19 years old before i met someone else with moebius syndrome,” she said. “for those 19 years, it was isolating. i felt alone. i felt like i was the only person experiencing barriers,” she said, later continuing, “when you think there’s no one out there that understands what you experience, it can be a lonely existence.”
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she notes that after finding a community of others who understood the barriers and the experience of living with moebius syndrome, her entire view of what her life could be changed.
“i saw how successful they are in their lives, their careers, their families, that’s when i really stopped, and i was like, ‘wow, i do have an opportunity to grow in this life and be someone, and since that time, i always wanted to be a voice for others with facial differences because i know how isolating it can be.”
kelsey and others who work to spread awareness for moebius syndrome and other conditions that cause facial differences aim to build an inclusive society free of underestimation of their capabilities, cruelty, whether intentional or not, and the isolation that comes with looking different.
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