Zoe Buxton is a fashion blogger who can’t dress herself — or even straighten her arms.

As Fox News reports, the 27-year-old from Ballymena, Northern Ireland suffers from Fibrodysplasia ossificans progressive (FOP), a rare disorder that makes her muscles slowly turn into bone.

According to the National Institute of Health, FOP generally appears in early childhood. It’s a genetic condition wherein muscle and connective tissue (like ligaments and tendons) develop into bone outside the skeleton.

As this happens to the joints, sufferers lose the ability to move. When it affects the jaw, it can make it difficult to speak or eat. When it progresses to the lungs, breathing can be affected. Moreover, any trauma can speed up the process.

As Buxton explained to BBC News:

“My arms at the shoulders are all fixed. Both of my elbows are fixed, and my left hip is fixed. So I can’t straighten any of those. I kind of just have to take every day as it comes because tomorrow I might not be able to open my mouth. My jaw could lock. I could get a cold and get pneumonia and possibly pass away because I can’t get my lungs drained.”

Buxton learned that she had FOP after a childhood accident when she broke her leg, then woke up to find it locked in place.

The teen years were especially difficult, as Buxton was self-conscious about the fact that she was confined to a wheelchair and worried about what others would say.

Now, however, she isn’t hiding from others. In fact, she puts herself in the spotlight. Buxton has become a fashion and lifestyle blogger on Instagram.

It’s not without its challenges. Even something as simple as getting dressed is a hurdle. She depends on her husband to help her dress, do her hair, and take the photos.

She told the BBC that she has had to accept some limitations, “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, and it is awkward.”

As a teen, she was self-conscious about her disability. On Instagram, she’s learning to let go. She added that she sometimes can’t help but compared herself to able-bodied bloggers:

“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.”

Buxton says that she has found Instagram to be a welcoming place “because no matter what you have to bring to the table, there’s always space for everybody.”

In fact, becoming a lifestyle and fashion blogger has helped Buxton find a reason to get out of bed in the morning.

As she told BBC News, she has always been interested in fashion, which is what prompted her to start a blog:

“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.”

And she hopes that her example will be inspiring to others: “Having this to focus on really helps me and I hope it helps someone else out there to see me doing it too.”

Though she frankly admits that it can be difficult to deal with her condition, Buxton doesn’t like to focus on the negative. As she wrote in a recent post:

“What I do have is a fabulous loving family, amazing friends. […] I can’t dress, feed or even go to the toilet my self and that does make me so sad, but how lucky and blessed am I in so many other ways […] count your blessings folks, we are beyond blessed.”

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2 Replies to “Fashion Blogger Uses Instagram to Share Her Rare Disease With the World. She Hopes it Helps Other People Too”

  • Carole S Johnson 2 years ago

    I know what your dealing with. I have PLS and am bedridden now. I can feed myself but that’s it.

  • Debbie 2 years ago

    God bless you.

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