Woman's Rare Disorder Turns Her Muscles into Bone
When Zoe Buxton, 27, discovered that she had a rare muscle condition, she didn’t just give up hope. Instead, she fought and found fashion as an inspiration to get her through the dark times.
Buxton, an Instagram star, has recently opened up about her condition, Fibrodysplasia ossification progressiva, telling BBC News about the challenges she faces.
Buxton, who hails from Ballymena, County Antrim, North Ireland, suffers from FOP, a rare disorder that takes the skeletal muscle and connective tissue and gradually replaces it with ossified bone, according to the National Center for Advancing Translational Sciences. Her twin sister also suffers from the disease.
FOP affects one in 1.6 million newborns, according to NIH. There is no current cure for the disorder.
Buxton told BBC News that her arms and left hip are “fixed in place” because of the disorder, and the disease can flare up anywhere at any moment.
“It is difficult, don’t get me wrong,” Buxton said.
“On Instagram there are the poses, everyone knows the poses, but I can’t do any of those so I’m just standing there with my two crutches.”
Buxton is a well-known figure on Instagram and also has a blog to showcase her fashion.
Buxton also uses her platform to discuss what life is like living with FOP.
“Having a condition where it could flare up at any time sucks, you can’t really plan for anything as it all could just change at the last minute, but what I do have is a fabulous loving family,” she wrote in an Instagram post.
Buxton’s husband Mike loves to help out however he can, whether he is curling her hair, getting her dressed or taking the photos.
“I need his help for most things and the fact he is interested in photography means he is happy to take and edit the pictures for my account,” she told BBC News.
Buxton found out that she had FOP when she broke her leg as a child.
She was in a wheelchair during her teenage years and often worried about what she looked like to other people.
“It’s the time of your life when you are worrying about what people think of you,” she said. “I try not to worry too much about that now.”
“Sometimes I worry about my crutches or wheelchair being in the pictures, but people have told me that they don’t see those, they just see the clothes.”
“I love fashion and have always loved putting looks together, that’s why I started out on Instagram,” she said.
“I also feel like getting up every morning and getting dressed, even if you aren’t doing anything, it is a really important thing for anyone with a life-limiting condition or who finds themselves low quite often,” she continued.
To help her get through the hard times with FOP, Buxton says she keeps focused on her Instagram account and hopes that through this effort she can inspire others.
While Buxton’s condition is rare, she has shown that she has the strength to power forward. We can’t wait to see what she does next!
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