28-Year-Old Model with Rare Ehlers-Danlos Skin Condition Is Bedridden from Health Complications

Sara Geurts became a body positive inspiration for women after sharing her experience with Ehlers-Danlos syndrome, a rare condition that causes baggy skin. But now the model is in need of help, after months of health complications from her condition.

The 28-year-old has type 1 and type 12 Ehlers-Danlos syndrome, which affects the collagen and connective tissue in the skin. In Geurts’ case, she has chronic fatigue syndrome as a result of the condition, and was recently diagnosed with cranial cervical instability, which is causing problems with her neck. The added complications left her bedridden in the last few months.

“This past winter was by far the roughest. I think in two months I went to 10 urgent care visits. I was sick to the point where I’ve been in bed for the past four weeks, haven’t left this apartment for six,” she told Barcroft TV. “It’s been a lot, not only physically, but emotionally, and it has a lot of people concerned, and a lot of people really wanting to know what’s going on, especially family and close friends.”

Geurts’ main job is at a YMCA in her hometown of Minneapolis, and she’s had to go on extended medical leave without pay due to her health. A recent MRI revealed that a “slipping disk” in her neck may leave her unable to support her head, requiring surgery.

She’s also having stomach problems, which caused her to lose 18 lbs. in the last few months. After a five-hour appointment with an Ehlers-Danlos specialist, Geurts learned that she may have other health issues.

“After the evaluation the specialist did find the high possibility of gastroparesis as well as possible mast cell disease or another underlying disease/disorder,” she wrote on Instagram.

Sharon Berglund, the mother of Geurts’ partner Briana, set up a GoFundMe page to help them manage her medical costs, as the Ehlers-Danlos specialists do not take insurance.

Geurts said she is struggling to stay positive, but she’s determined.

“I’m trying to re-spark the flame of my vision and inspirations and not fall into a complete negative state but find these recent events to be taking their toll…BUT I will not give up,” she wrote on Instagram. “I will try my hardest to remain positive and strive today and every day to do as much as I can when I can, and to be patient, vulnerable and love my body.”

Geurts told PEOPLE in 2017 that she initially wanted to share her story — which she continues to do on Instagram — to help others with the condition.

“I hope that it raises awareness for Ehlers-Danlos,” she said. “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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