By Bunmi Adigun @Bunmi_Adigun
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Videographer / director: William McLeod
Producer: Bunmi Adigun, Ruby Coote
Editor: Joshua Douglas
Hoping to break into the modelling industry, Sara Geurts from Minneapolis, Minnesota, is determined to carve out a successful modelling career despite battling with Dermatosparaxis Ehlers-Danlos syndrome (EDS) - a genetic condition that leaves her with excessively saggy skin.
Ehlers-Danlos syndrome is a fairly rare condition affecting only 1 in 5,000 worldwide, however only a dozen people have been diagnosed with Sara’s type of the condition, Dermatosparaxis Ehlers-Dalos syndrome.
The syndrome causes Sara to have soft, doughy skin that is extremely fragile and her joints and muscles are also weak and often leave her in discomfort.
Sara said: “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.”
Although Sara doesn’t suffer from symptoms such as frequent dislocations and severely brittle bones, which are typically associated with sufferers from the classical type, Dermatosparaxis Ehlers-Danlos does come with its own pitfalls.
Sara said: “There are numerous Ethlers-Danlos patients out there that have joints dislocate all the time. They are constantly in braces of wheelchairs. Thankfully, I have not had that severity with my joints. I do have severe pain and things like that but they do not dislocate on a regular basis as of yet.
“I have noticed as I get older, my discrepancies and my pain to my symptoms play a larger role in my life. I refrain from wearing super tight clothes because the more I do wear it causes constriction and because of the extra skin it can rip and cause tearing.”
To deal with her joint pain, Sara relies on natural remedies such as massage therapy, acupuncture and medical marijuana, which is legal in Minnesota.
She said: “The majority of the Ehlers-Danlos patients take copious amounts of opioids and pain medications. I myself stick to more natural remedies and prefer massage therapies, acupuncture and essential oils. Anything that’s basically natural I am all for, including medicinal marijuana.
"I took a vow not to prescribe myself a day-to-day pain medication just due to that addictive personality and stuff like that."
The aspiring model first started noticing something different about her body when she was just seven-years-old and it got progressively worse as she entered puberty.
With little known about the condition at the time of the initial symptoms, Sara had to pay numerous visits to doctors and undergo a series of different tests.
She said: “I noticed it as early as about the age of seven and I mentioned it to my parents. It wasn’t till I was 10 that they brought in a dermatologist, because I started getting severe acne and sores on the top of my hairline.
“They did a series of tests including like touching my tongue to my nose. I had to touch my hands to the ground, just bend over type of thing. They had me run through these series of tests and then they told my family and they were pretty confident that they diagnosed me with Ehlers-Danlos.”
It wasn’t until high school that Sara’s condition became more apparent and for years she struggled with low self esteem and would often go out of her way to hide her body in the hopes of not getting bullied due to her condition.
She said: “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.
“I just didn’t want to know about it. Everything out there wasn’t pleasant information for me to read.”
"I would say my, my biggest insecurity with Ehlers-Danlos would have been my skin. From being out in public and wearing tank tops and dresses and shorts. As I got older it, it just kind of started to show more and more.
“I wasn’t bullied and my family and friends were very supportive, but I hated my skin. I was lucky I didn’t get any nasty remarks, but while my friends wore revealing outfits, I’d hide away in baggy clothes.”
However, when she was 22, after a difficult break up, Sara decided she needed to change how she saw herself.
And in 2015, Sara gathered the courage to submit a photo of herself to Love Your Lines, a tumblr page encouraging women to embrace their stretch marks, scars and other imperfections.
She said: “The Love Your Lines Campaign was my first campaign that I had submitted my story to, as well as my pictures.
“I’ve received 25,000 likes and that was a privileged moment for me because it clicked - I could do something with this! It was just amazing, I literally cried for two hours because I was in disbelief.
“From then on I was dedicated to showing my disorder and raising awareness.
“It really was a difficult journey, difficult road. But with the amazing support group that I had, be it my clinical friend or my cousin, who is also a plus size model, they were the ones that turned me back on the road of self-love, self-confidence.
“I started to look at myself and my body in a completely different way. Up until that point I want to say I wasn’t fulfilling life.
"I was very insecure when I was younger and now I feel I am the most confident I have ever been.
"I tried to cover up my skin constantly. And I didn’t want to talk about it. But now I think it’s just the most beautiful thing ever.
“Just the uniqueness and the rarity and the way the lines form and just the art that is made from just the patterns that are there. It’s amazing. It makes me so sad that I looked at it as just this ugly thing at one point in time."
One of Sara’s biggest supporters and the reason she got into modelling, is her girlfriend, Briana Berglund, who is now Sara’s personal photographer.
Briana said: “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 and she is just so amazing I’m so proud of her.
"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.
"We started taking photos probably about two years ago, just using just a phone and then we upgraded to a Nikon.
“We like to travel and just take photos pretty much anywhere we can. We like to do lots of street-style photos, lots of photos in the studio and we like to rent out studios and do a photography there too.
"I really love to take photos of Sarah because she is so beautiful and its so much fun I love it its one of my passions."
At one point in her life Sara’s skin was her biggest insecurity, now she takes pride in her unique look and fully embraces it as she heads towards a career in modelling.
She said: “My main aspirations for modelling with Ehlers-Danlos would be to break society’s standards and the mentality that they have for perfection and what is viewed as perfection out there in media, in magazines and everything, and to really show that it is your imperfections and your uniqueness that is the true beauty out there.
“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.
"Personally I hope that by getting out there with modelling with my Ehlers-Danlos, I am able to almost be the face of Ehlers-Danlos. And not only, you know, raise awareness but spread the word, connect with people."
Sara plans to move to LA, where she hopes she can properly promote her modelling career.
"I would like to go out to LA as soon as possible, given the modelling industry out there. I want to connect with new people new to try and get my story out there and raise as much awareness as I can. That would probably be my venture for the rest of my life. “