Woman with Rare Disorder That Causes Baggy Skin Dreams of Modeling: 'I Hope It Raises Awareness'

Sara Geurts has Ehlers-Danlos, a genetic disorder that causes her skin to sag — but she won't let it stop her from becoming a model

Sara Geurts is done hiding her skin. The 26-year-old has Ehlers-Danlos, a rare genetic disorder that causes her skin to sag. After spending many years embarrassed by her condition, Geurts is now showing off her skin — and hopes to inspire others through modeling.

Geurts says she first started to notice that something was strange about her body when she was around 7 years old, but wasn’t bothered by it.

“I think because I was so young I didn’t think there was anything wrong with me … being little kids we weren’t really wrapped up in society’s standards yet,” Geurts, 26, tells PEOPLE. “I looked at it more as something that made me cool because I was the only one who had skin like that.”

Diagnosed with Ehlers-Danlos at age 10, Geurts is one of 200,000 people who are typically diagnosed each year. The disorder presents itself in different ways, but for Geurts, her skin gets more saggy, her joints dislocate easily and she gets herniated discs.

“Because my diagnosis came at such a young age we kind of brushed it aside,” she says. “I hid my pain; I hid my symptoms. I got really good at finding my own remedies like physical therapy, massage therapy, essential oils.”

Even now, Geurts avoids taking pain medication.

“I don’t take opioids as pain management. It’s definitely been rough, but I’ve worked a full-time job since I was 18 years old, and I’ve worked since I was 14. It’s mind over matter for me.”

https://www.instagram.com/p/BVpoR5-jIpl/Credit: Briana Berglund
Briana Berglund

But she admits the sagging skin did start to affect her body image after she hit puberty.

“As you get older and you go through those bodily changes your mindset starts to change, especially as a woman. That was when my mindset turned to an unhealthy place,” she says.

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Then about two years ago, her cousin encouraged her to submit photos to the viral body empowerment campaign #LoveYourLines, and the outpouring of positivity boosted her confidence.

“People would reach out to me to share words of support and share their own journeys. From there, I really changed my mindset,” Geurts says. “It wasn’t about me anymore, it was about helping other women find their beauty within themselves, and look at their imperfections and know that they are beautiful.”

“From there I just continued to share my photos, and I didn’t care what people thought. I just cared about how it was impacting the people I was aiming to help.”

Now Geurts, a billing specialist living in Minneapolis, Minn., wants to build a modeling career. With her story gaining traction online, she’s already booked the cover of Volition magazine, and is working on additional projects in New York City.

“I hope that it raises awareness for Ehlers-Danlos,” she says. “Even if it inspires just one person who thinks they might have it to look up the symptoms or talk to their doctor about it, that alone is the whole reason I’m doing it. That, and to ease the journey to self-love for every individual out there who thinks they need to hide their imperfections because society tells them to. Our imperfections are our perfections and they’re worth celebrating.”

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