A woman with a one-in-a-million health condition has shared what life is like with the rare syndrome – saying she is constantly stared at in public due to her looks.
Chelsea Langerud, 22, was diagnosed with Oculo-facio-cardio-dental syndrome (OFCD), a rare multiple congenital condition affecting the ears, mouth, eyes and face, at an early age.
For the young woman, this has meant a lifetime of surgeries including 20 eye operations by the age of one, and countless more since.
But she says the worst part of her battle has been the attention her features – including her prosthetic eye – get in public, garnering stares from strangers when she is out and about.
“My reality is that nearly every day I am met with exaggerated looks, confused stares and curious comments,” Chelsea, a graphic design student from San Diego, California, told NeedToKnow.co.uk.
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“While difficult circumstances come and go, one of the hardest obstacles I’ve had to overcome has been the social experiences I’ve encountered.
“Some days I may feel that the best approach to confronting someone is attempting to educate them by responding to their comments or explaining my situation.
“Whereas another day, I may feel the best option is to hold my head high and keep on walking.
“I aim to educate others in these moments and understand curiosity, [but] being on the other end of these daily interactions quickly becomes exhausting.
“Throughout the years, I continuously learn just how little external images matter in the grand scheme of things.”
Chelsea’s health battles started when she was born with bilateral cataracts, leading to her first surgery at six weeks old to remove them.
The surgery was unsuccessful in one of her eyes, leaving her with no vision in the right eye, and leading to numerous further procedures.
She said: “By the time I turned one, I’d already had 20 invasive eye surgeries.
“With cataract surgery removing the lens in my left eye, I now wear a high-powered, custom-made contact in my left eye along with glasses for protection.”
Another major medical hurdle she encountered early on was the condition of her teeth – which didn’t come out naturally as baby teeth during childhood, and instead had to be extracted.
Chelsea explained: “Following these extractions, I wore braces for almost six years that helped improve the remaining teeth that were either missing or unaligned.
“I often had to go to various doctor appointments. I regularly missed school to travel to several doctors, both in and out of state.
“I felt strongly self-conscious around my teeth and smile my entire life.”
In 2009, at the age of nine, a geneticist detected numerous symptoms of OFCD – including a heart murmur, and the various issues she was facing in her eyes and mouth – and she was officially diagnosed.
Despite struggling with the attention she receives in public, Chelsea has come to accept her appearance – and says she is all the better for it.
She said: “I once believed I differed greatly from everyone around me until I eventually realised that everyone carries a tremendous amount of similarities underneath it all.
“Coming towards a place of self-acceptance has been an incredibly freeing journey.
“I can fully be myself without worrying I’ll accidentally reveal a part of myself I had been trying to hide from others.
“Although I never had, and never will have, control over what life throws my way, the only control in my hands is the way I choose to respond and the lessons I learn from the situations I’m in.”
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