Meet the Minnesotan with a rare disorder who's crushing beauty standards

Sara Geurts is on a mission to prove that every body is beautiful.
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A Minnesota model is showing off her unique body to raise awareness about her rare disorder and challenge society's unrealistic standards of perfection.

Sara Geurts wasn't always comfortable with or accepting of her condition, Ehlers-Danlos Syndrome (EDS). It's a group of genetic disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues.

For many people with EDS, it's an invisible illness that can easily dislocate joints, make skin fragile and cause chronic pain. But Geurts also has the super rare Dermatosparaxis form of EDS, which means her body has trouble producing collagen – the protein that keeps skin firm and elastic.

As a result, she has loose skin that sags in "wrinkles" all over her body.

 Credit: Sara Guerts

Credit: Sara Guerts

Although she was diagnosed with EDS at only 10 years old, Geurts told GoMN she had a normal, happy childhood growing up in the Golden Valley area.

But as she got older, her stretchy skin became more noticeable. By her senior year in high school, Geurts hated her skin and tried to hide her condition.

"My whole mentality was unhealthy, so it caused many of my relationships to be unhealthy. I wasn't my true self," Geurts told GoMN.

After a rough breakup in her early 20s, Geurts realized her insecurities about her body were affecting every aspect of her life, and she made a conscious decision to flip the switch.

A friend suggested she submit her story to The Love Your Lines Campaign, a body positivity blog on Tumblr. Nine months later, Geurts' writing was published on the site – and the messages started pouring in.

"Immediately I had a bunch of followers and emails coming in constantly from supporters and other people with Ehlers. So many people were reaching out and wanting to connect with me. That was the point that I knew it wasn't about me anymore," Geurts said.

Since then, the now 26-year-old Minneapolis resident has been in dozens of photo shoots. Last month, she was featured in a short film for Barcroft TV – and then things really took off.

Now her story has been published on Refinery29, The Huffington Post, Allure Magazine, Teen Vogue, and more – and even shared on social media by celebrities like Lil Wayne.

Geurts says she's blown away by the positive feedback that she's received and hopes to keep it going.

"I hope to change the vision of perfection within our fashion industry and really grasp the notion that every body is beautiful," Geurts told GoMN.

Q & A

Your story is spreading online – why do you think it's resonating with other people? I think it has a lot to do with the shock factor of me being happy with myself. I think a lot of people really don't understand that because of the tainted realities we see on TV or social media.

And people see themselves in my story. I'm basically the saying "love the skin you're in," embracing who I am and the journey that it's brought me on. Everyone has something they're insecure about, but they see me accepting myself for who I am, and I hope it helps them on that road to loving themselves.

Why do you want to be the face of Ehlers-Danlos Syndrome? Because I'm the rare type. A lot of people with Ehlers have invisible symptoms, and so they are swept under the rug – it is one of the most under-diagnosed disorders out there. If I can provide my own body to raise awareness of the condition and educate doctors, that alone is worth it.

What do you love about your body? I love my skin of course! I know that my disorder causes pain and certain limitations, but that doesn’t substitute the beauty within it, I just had to find it. The patterns and the way the lines form are all beautiful reminders of the journey I have been on and the life I have lived.

Why do you think body image is such a big deal right now? I think that society has put an image in front of us for so long of what we're supposed to look like, or what we're supposed to eat to look that way, that we're fed up. We are being told we have to look a certain way to be happy, then when we achieve that look we’re still miserable.

Loving your body and loving yourself is the new trend because it is a concept that's baffling to society today, and everyone wants to know how to love your body.

Comment sections can be brutal – how do you deal? I try to stay away from my comments. When my video [for Barcroft TV] first went up, right away I read the comments and acknowledged that it made me upset. To me, wasting that energy on such negativity was even more upsetting. So I took a vow that I wasn't going to feed into the drama, whether it be bad or good. If people reach out to me in a message or email, I'll respond. But I don't read the comments anymore.

Any advice for people who feel uncomfortable or insecure in their own skin? My advice would be to always be gentle with yourself, and take your journey slow. Self love is a road that never really ends. Consistently be around those who offer genuine support and love. You are beautiful, and the scars you bear are individual to you and no one else has the same beauty as you.

You can follow Sara Geurts' journey on Instagram.

Meet the Minnesotan is a new weekly feature at GoMN focusing on creators, do-gooders, and interesting people throughout our state. Do you know someone who should be in the spotlight? Email suggestions to ksapp@gomn.com.

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