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Monday, 27 May 2019
Instagram star who is 28 is bedbound after rare skin condition hits her and made her look 88
A model has been left bed bound by a skin condition that makes her look years older. Sara Geurts, 28, has Dermatosparaxis Ehlers-Danlos syndrome (EDS), a genetic condition that leaves her with excessively saggy skin. The Minneapolis, Minnesota woman has extremely soft, doughy skin because of the condition, which also leaves her joints and muscles weak. But she hasn't let the syndrome which only a dozen people have hold her back.
Two years after embarking on a modelling career she has found fame as a body positive activist, attracting 76,000 followers in the process. At the start of her career in 2017 Sara spoke of how grateful she was to avoid certain symptoms.
At the time she 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."
While she has found great success in the past two years, Sara's condition has gotten a lot worse.
The syndrome has left her bedbound and unable to eat for long periods of time.
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 funds donated by her supporters Sara has been able to see a specialist, who suggested her condition might have been caused by gastoparesis or mass cell activation disease.
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