Half-Korean woman, 26, with rare disorder that causes saggy skin carves career as a model

PHOTO: Instagram/ sarageurts

Unconventional appearances won't stop this woman from chasing after her dreams.

Sara Geurts has a rare disorder that makes her skin appear wrinkly and saggy, but is challenging the status quo by pursuing a modelling career.

The 26-year-old from Minneapolis, Minnesota has Dermatosparaxis Ehlers-Danlos syndrome (EDS), a genetic condition caused by defects with the body's collagen protein.

According to The Sun, although the condition affects 1 in 5,000 people, Sara is one of only 12 people in the world living with her specific type of EDS.

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It causes her to have soft, doughy skin that is very fragile, along with weakened joints and muscles that often leave her in a lot of pain.

Geurts described the experience of having the rare syndrome: "The classical type of Ehlers-Danlos syndrome affects our joints, it affects our skin, everything. It's a multi-systematic disorder, so it affects every system within our body."

There are some Ehlers-Danlos patients who have their joints dislocated very often, thus necessitating braces or wheelchairs.

Luckily for Sara, her joints do not dislocate on a regular basis as of yet, but she does experience severe pain.

"I have noticed as I get older, my symptoms play a larger role in my life," she said to the paper.

"I refrain from wearing super tight clothes because it causes constriction and, because of the extra skin, it can rip and cause tearing."

To cope with the joint pain, Sara opts for natural remedies such as massage therapy, acupuncture and medical marijuana instead of opioids and pain medications.

While Sara loves her body now, this was not always the case.

"In high school, I just tried to cover it up. I didn't want anyone to ask me questions about it. I didn't want to talk about it," Sara shared.

"I would say my biggest insecurity was my skin. As I got older it, it just kind of started to show more and more."

However, her outlook on herself changed at 22 years of age, after a bad breakup.

"It really was a difficult journey. But with the amazing support group that I had, I started to look at myself and my body in a completely different way."

When she was younger, Sara was much more insecure, but now she feels she is the most confident she's ever been. 

"I tried to cover up my skin constantly. But now I think it's just the most beautiful thing ever. Just the uniqueness and the rarity, the way the lines form and the art that is made from the patterns that are there. It's amazing," she told The Sun.

Reflecting on her past self, Sara said: "It makes me so sad that I looked at it as just this ugly thing at one point in time."

Now, with the help and support of her girlfriend and personal photographer, Briana Berglund, Sara is working on creating a path for herself in modelling.

According to a report by Mirror, Berglund said of Sara: "I'm so proud, she's come so far over the last couple of years. It's just crazy how much she has really come out of her shell.

"I don't really see the disability or disorder in Sara. I think she is just beautiful the way she is. I don't really notice any difference in her from anyone else."

Regarding her goals, Sara hopes to encourage people to embrace their unique characteristics and to redefine what beauty is.

"We are in the generation of albinism models. We have melanin models. We have vitiligo models. We have plus size models. And those are all fabulous things. But the one thing that we are really missing are people with disorders within our everyday commercials."

Models with rare genetic conditions

  • Chantelle Young-Brown, professionally known as Winnie Harlow, has a chronic skin condition called vitiligo, in which irregular white patches adorn her skin's complexion.
  • Other celebrities with vitiligo include Michael Jackson, Steve Martin, and Feng Xiaogang.
  • The young Canadian, who first appeared on Cycle 21 of America's Next Top Model, has sparked conversation about her skin condition.
  • 29-year-old Caitin Stickels is a model, actress, and singer who was born with Schmid-Fraccaro syndrome, also known as cat eye syndrome.
  • According to Cosmopolitan, cat eye syndrome is an unusual chromosomal disorder that causes facial disfigurements such as an absence of tissue from the coloured part of the eyes, creating a cat-like appearance.
  • She sure makes embracing our idiosyncrasies look fierce.
  • Sara Geurts, 26, has a rare disorder that makes her skin appear wrinkly and saggy.
  • Dermatosparaxis Ehlers-Danlos syndrome (EDS) is a genetic condition caused by defects with the body's collagen protein.
  • The syndrome causes her to have soft, doughy skin that is very fragile, along with weakened joints and muscles that often leave her in a lot of pain, but it doesn't seem to stop her from pursuing her dreams!
  • Melanie Gaydos was born with both ectodermal dysplasia - a condition where pores, teeth, nails and small bones form abnormally - and alopecia - making her partially blind from eyelash growth that scratched her eyes as a child.
  • Gaydos' made her mark in the fashion industry after responding to an advert on Craigslist looking for "unique people" for fashion photographers to shoot.
  • She is an art graduate based in New York City, has worked with photographers including the world renowned Spanish photographer Eugenio Recuenco and counts Miley Cyrus as a fan.

"I want to break society's standards and what is viewed as perfection, to really show that it is your imperfections and your uniqueness that is the true beauty out there."

By adding her story to the narrative and raising awareness for EDS, Sara will be doing just that.

thanhb@sph.com.sg