By Nathalie Bonney @nathaliebonney
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Videographer / director: Mark Brown
Producer: Nathalie Bonney, James Thorne
Editor: James Thorne
Sara Geurts from Minneapolis, Minnesota has Ehlers Danlos Syndrome, a connective tissue disorder that means her body lacks collagen. While most people with Ehlers Danlos Syndrome show no visible signs, Sara’s rarer form of Dermatosparaxis EDS causes her skin to sag excessively.
Two years ago, Sara went viral in a Barcroft TV video about her condition and since then has been making waves in the modelling industry. But in spite of her success, Sara continues to battle with poor health and the last year in particular has been one of the hardest.
Spending long periods of time bedbound and unable to eat, the body positive model is on a two-pronged mission: to find the medical treatment she so desperately needs and to continue championing greater representation in the modelling industry.
Sara told Barcroft TV: “These last four years of my life I feel like have been the best years that I've ever lived just 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.
“The last filming we did with Barcroft was about two years ago now. 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.”
Sara first started posing for pictures on her Instagram account, with photographer girlfriend Bri Berglund behind the camera.
She said: “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. 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.
“We chose to use my symptoms of my disorder through photography as a way to help others or try to, because [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?’”
Common symptoms of EDS include joint hypermobility and pain, fatigue, loose skin and digestive problems; however, there are multiple types and how it affects each individual can vary massively.
Sara explains: “It's a collagen deficiency. So collagen is found in your skin, in your ligaments. For me, I don't have any collagen in my skin, which causes that extreme laxity.”
“It wasn’t until she was aged six or seven that Sara first started to notice her stretchy skin; and at the beginning it was simply a fun playground brag.
“All the kids in the neighbourhood thought I was so cool, because I had the stretchy skin. And then I think it wasn't until in between the ages of eight and 10 that I was diagnosed.”
During her teenage years Sara grew self-conscious of her skin’s creases and would hide in long sleeved tops even in the summer.
“I just wanted to cover it up. I didn't want anyone asking me about it. I wore jeans and sweaters at 90 degree weather. I refused go to the pool; didn't want to be in a swimsuit all that type of stuff, just because I knew people would look and people would wonder,” she explained.
It wasn’t until she hit her twenties that Sara finally found the confidence to not only show off her body but to wholeheartedly love it.
She said: “I think back to the times in high school or just even in the past when I didn't love myself and just how toxic everything was in the lifestyle that I was leading. And it saddens that I tried to cover it up and that I was so insecure.
“Now it's just a complete 360, it's like I am who I am, my disorder is a part of me but I'm not my disorder. And I love my body.”
Sara and Bri continue to shoot together but more recently Sara’s deteriorating health has made regular photo shoots difficult.
Sara said: “This past winter was by far the roughest. I think in two months I went to 10 urgent care visits alone and unfortunately those weren't EDS specialist.
“I've lost a significant amount of weight - at least 15 pounds and so that's pretty dramatic for me. And it has a lot of people concerned.
“I think that's where the GoFundMe idea started in terms of trying to figure out what specialist we need to see.”
Through Gofundme, Sara has finally been able to see an EDS specialist in Minneapolis; however this won’t cover the ongoing medical costs.
“We did find the high possibility of gastroparesis and then we did also find the possibility of mass cell activation disease or another underlying disease or disorder. So we have quite a long way to go in terms of the tests and the specialist that we have to see.
“But, you know, going through these steps of trying to find them is just kind of confirmation for Bri and I in terms of what we're doing and why we're trying to raise awareness.”
For both the sake of their careers and Sara’s health; the couple are considering a move to LA.
Sara said: “Minnesota is difficult so that is part of the reason, not only health wise but inspiration wise we think Los Angeles will be a better place for us.
“Hopefully, a warmer climate will help with that, along with pursuing what we're doing in terms of raising awareness, modelling, diversity inclusion, and just spreading the word about body positivity overall.”