Rare disease makes this 26-year-old woman look decades older

By Nombulelo Manyana
14 July 2017

"My sagging skin was my biggest insecurity."

Looking at her sagging skin and wrinkles it’s hard to believe she’s not an old woman, but aspiring model Sara Geurts is only 26.

When she was 10, Sara was diagnosed with Ehlers-Danlos Syndrome (EDS), a rare genetic condition that leaves her with excessively saggy skin which makes her look decades older then she really is.

Sara has recently opened up about how she’s learnt to love her body, and her message is truly powerful!

"My sagging skin was my biggest insecurity," Sara said in an essay for The Mighty.

She says, in high school, she used to try and cover it up and she didn't want anyone to ask her questions about it.

"Growing up, my family did not think there was anything specifically wrong with me, especially with it being branded as an invisible illness.

"I was consistently pushed to the sidelines when trying to cope and learn about the effects of Ehlers and my future with it."


She was diagnosed when she was 10 years old but she’d already started noticing her skin beginning to sag when she was seven. She saw numerous doctors and underwent a series of tests.

At high that Sara’s condition became impossible to ignore and for years she struggled with low self-esteem. But it wasn't until a failed relationship at 23, that she started to rethink the way she looks at herself.

"Upon serious self-evaluation, I realized my insecurities caused me to lack any confidence, which had an impact on all of my social and personal relationships," she wrote.

"I observed that hating certain parts of myself and body triggered my unhealthy mindset, which others sensed as well."

She resolved that she was going to be true to herself and love her body, disorder and all.

Sara started in 2015 by submitting her story to the Love Your Lines campaign on Tumblr.

"From then on I was dedicated to showing my disorder and raising awareness. It really was a difficult journey, difficult road."

She says her cousin Yasmin, and best friend, Briana Berglund, were the ones who really helped me with her journey to raising awareness about EDS. She has started modelling and shares her story on social media as well.

"My goal is to shed light on the unhealthy mindsets we currently have within the fashion and modelling industry today. I believe the scars and discrepancies we have are reminders to the world of what we have been through as individuals."

"We should not be urged to “cover them up” or “remove them” but instead glorify them!"

Her aim is to be the first recognized models with Ehlers-Danlos and to help other realise "the true beauty within themselves," she wrote in The Mighty.


"I may have a disorder, and yes, my disorder is a part of me, but I wouldn’t change it for the world. My physical discrepancies are gentle reminders of the fighter I am.

"My lines make me, me. Each line holds beauty, and is beautiful in its own way. No one else carries the exact lines I have, and this is what I consider to be truly beautiful."

"I aim to break society’s transparent barriers of perfection. Barriers that subliminally tell us all to be perfect in all aspects of life, work, social and personal interactions," she said.

"'Be this skinny and you’ll be happy,' 'Buy this and you’ll be happy,' 'Look this way and you’ll be happy.' Really? It is the imperfection that makes us perfect and is where true beauty lies. A reminder we all need: love your body, love yourself, be gentle with your body, be gentle with yourself."

Sources: Allure Magazine. The Mirror. The Mighty

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