Being comfortable in your own skin is a great aspiration, but it’s easier said than done. Especially when you’re insecure, even ashamed of your skin. This deep sense of imperfection was a familiar feeling for Sara Geurts, a native of Minnesota. In Sara’s case, though, there was no way to hide her perceived imperfection because Dermatosparaxis Ehlers-Danlos Syndrome (EDS) is not something you can hide.

Sara Geurts Journey with Dermatosparaxis Ehlers-Danlos Syndrome

At the young age of 10-years-old, specialists diagnosed Sara with a rare skin condition. Technically, EDS is a connective tissue disorder that hinders the body from producing collagen.[1] As a result, since the age of ten, Sara’s skin has prematurely wrinkled and made her look far older.

EDS: How Common is It? Who Gets It? What are the Health Risks?

In addition to affecting the skin, EDS can also cause damage to joints. But the severity of EDS symptoms varies from mild to life-threatening. Generally, doctors recognize over ten types of EDS and include many nuances from person to person.[2]

For someone to get EDS, they need to inherit it through a specific gene. But what triggers EDS is a mutation in both copies of the responsible gene in each cell. What’s unfortunate is that while both of Sara’s parents, for example, show no signs or symptoms of EDS, chances are they each carry one mutated copy of the gene.[1]

Symptoms and Complications of Dermatosparaxis Ehlers-Danlos Syndrome

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These can include:[1]

  • Soft, doughy, fragile skin
  • Severe bruising and scarring
  • Saggy excess skin, especially on the face
  • Hernias
  • Short stature
  • Short fingers
  • Mild to severe hypermobility in the joints

To avoid any health complications, people with EDS may do physical therapy, especially if they have hypermobile joints. As a preventative measure, others may choose to use braces, wheelchairs, or scooters to move around more easily and less painfully. Medical professionals have also created protective pads and bandages for EDS patients to help fragile and easy-to-bruise knees, shins, foreheads, and more.[1]

How Sara Geurts Thrives with Dermatosparaxis Ehlers-Danlos Syndrome

“My skin was my biggest insecurity” growing up, says Sara. “But now I think it’s the most beautiful thing ever. Each imperfection your have is individual to you and it tells a story about you and who you are, and the struggle and the journey that you have been on.”[3]

But it was no easy feat. In fact, it took Sara until the age of twenty-two or twenty-three to truly being to embrace her wrinkles. Now she’s 26-years-old and living in Los Angeles on a mission to dismantle current and accepted superficial beauty standards.

Dermatosparaxis Ehlers-Danlos syndrome

Sara’s mission really took off in 2015, after she submitted her story to Love Your Lines, a body positivity campaign that praises women’s imperfections and sees them as perfections. Clearly, it was a huge turning point for her.

In a recent Instagram post, Sara wrote:[4]

“You’re going to meet people who are intimidated by you. You’re different. People don’t know how to react or how to accept someone who doesn’t follow the crowd… They are not used to someone who doesn’t try to fit in – so instead of bolstering your uniqueness, they’ll try and make you feel like you’re weird or damaged. I’m here to offer some well-earned advice: Screw them.”

Dermatosparaxis Ehlers-Danlos syndrome

Here’s to Changing Beauty Standards!

Just like Sara Geurts, every single day, no matter how downtrodden you feel, you should own the skin you’re in. Don’t let physical, surface-level traits be your only gauge of beauty. There’s something human about love and acceptance that goes far deeper than the appearance of your skin. It’s about time we elevate our culture’s beauty standards and you can help take it there.

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The Hearty Soul
Health Network
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