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The SHOCKING condition that keeps this body positive model bed bound and unable to eat

The 28-year-old has an extreme form of a connective tissue disorder called Dermatosparaxis EDS.
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Sara Guerts is using Instagram to spread a very important message to her 82.6k followers. Love the skin you’re in.

The 28-year-old who hails from the US has a rare skin condition that causes her skin to sag excessively called Dermatosparaxis EDS.

In hopes of raising money for the condition, which leaves her bed-bound and unable to eat, Sara spoke out about it on her Instagram and just a few days, she gained over 80k followers – making her a bona fide influencer.

While motivating thousands across the globe, she isn’t in the best health, although, when speaking with Metro, she told them that “these last four years of my life I feel like have been the best years that I’ve ever lived.”

“Because they’ve been lived to what I feel is my genuine and my authentic self.”

“And how I feel about my body is how I want everyone to feel about their body no matter their circumstances or what they are in. From being admitted to different books, to magazines, with Winnie Harlow, Wiz Khalifa, Mandy Moore, different, inspirational figures like that.”

“It’s been quite the exciting journey ever since then for sure.”

READ NEXT: Meet the six Australian women in Dove’s new body positive campaign #ShowUs

The 28-year-old has an extreme form of a connective tissue disorder Ehlers Danlos Syndrome (EDS) called Dermatosparaxis EDS.

(Image: Instagram @sarageurts)

In a recent and candid Instagram update, she opened up about how the disease had impacted her health “emotionally and physically”.

“After a very painful MRI last week we are now worried about slipping disk in my neck not being able to support my head weight as well as numerous upcoming appointments with specialist for my Gastroparesis, MALS & POTS.

“I also have now found I will not be able to return to my regular job even after we are able to complete these tests..which for someone who has worked since 14 has been hard to grasp.. I apologise for my absence and hope you are able to understand it’s a day by day process for me and your support and love means so much…”

“I’m trying to respark the flame of my vision and inspirations and not fall into a complete negative state but find these recents events to be taking there toll… BUT I will not give up. I will try my hardest to remain positive and strive today and everyday to do as much as I can when I can, and to be patient, vulnerable and love my body in the times and events I can’t…”

https://www.instagram.com/p/BxfbHJkFnaI/

Sara used to cover up her skin in long sleeves because she was so conscious of people looking or asking about her condition.

When she hit her twenties, she finally found the confidence to wear a swimsuit and to love her body unconditionally.

“I am who I am, my disorder is a part of me but I’m not my disorder. And I love my body,” she said.

The stunning model is trying to remain positive as her health deteriorates.

(Image: Instagram @sarageurts)

Sara first started posing and posting to her account, with professional photographs by friend, Bri Berglund – whom she touts as her main inspiration.

“Bri was the one who was the main inspiration in terms and support of what I was doing in terms of loving my body and loving myself,” she told Metro.

“I was at a really bad point in my life, really bad habits, really bad people and it took a lot of cleansing in terms of that and she was there to help see that light and to aid me through that journey.

Using her symptoms of the disorder through photography was a way to help others because mostly, EDS is known as the “invisible illness”.

“I’m kind of the rare case where I am visible. And so that’s why a lot of people out there aren’t getting the treatment that they need because the doctors can’t physically see anything wrong with them. ‘And why I chose to say “okay, fine if I have something that I can show about my disorder why not use that?”‘

Sara and her “inspiration”, photographer Bri Berglund.

(Source: Instagram/SaraGeurts)

EDS is a collagen deficiency which affects every sufferer differently.

“For me, I don’t have any collagen in my skin, which causes that extreme laxity,” Sara said.

Common symptoms include joint hypermobility and pain, digestive issues, fatigue and loose skin.

To help raise money for treatment for Sara, you can find her GoFundMe page here.

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