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Sara Geurts' Battle with Ehlers-Danlos Syndrome

Sara Geurts’ Battle with Ehlers-Danlos Syndrome

Sara Geurts is a 25-year-old Minnesota woman living with Ehlers-Danlos Syndrome (EDS.)

Sara Geurts - Ehlers-Danlos Syndrome AdvocateAccording to Genetics Home Reference, “Ehlers-Danlos syndrome is a group of disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues…Many people with Ehlers-Danlos syndrome have soft, velvety skin that is highly stretchy (elastic) and fragile. Affected individuals tend to bruise easily, and some types of the condition also cause abnormal scarring…Although it is difficult to estimate the overall frequency of Ehlers-Danlos Syndrome, the combined prevalence of all types of this condition may be about 1 in 5,000 individuals worldwide.”

In addition to dealing with the everyday struggles of EDS, Sara spends her days serving as the Senior Billing Specialist for the childcare and summer programs at the YMCA of the Greater Twin Cities headquarters in Minneapolis. She is also the Co-Chair of their Asian Employee Resource network, of which there are only five in the country.

The YMCA’s chronic illness sector is what originally caught Sara’s interest nearly two years ago. It has since become what she calls one of the best organizations she’s had the pleasure to work for.

She is a firm believer that the Y is a place for everyone, much like the body positive community is. Sara has used both places to explore her disorder and its relation to her journey to accept and love her body, EDS and all.

I was lucky enough to hear all about that journey in Sara’s own words.

Sara’s Story

Around the age of 23, I had started a relationship before really understanding or acknowledging my disorder. I look back at that person now and truly have no idea who she was.

My insecurities with EDS caused a major block in the relationship. That block ultimately led to the relationship failing. It was at that time that I did some serious self-analysis.

What I realized, among other things, was that my insecurities caused me to lack any type of confidence. In turn, that impacted any and all of my relationships, romantic and otherwise.

Hating certain parts of myself and my body so intensely allowed for others to sense my unhealthy mindset. This made it impossible for any relationship to ever reach its full potential. It was a hard reality for me to grasp and it took a lot of time and patience.

During this time, my amazing cousin, Yasmin Geurts, and best friend/main photographer, Briana Berglund, really came through for me. Those two have stood by my side through it all; from the very start, to now, they’ve always been there.

Sara Geurts - Ehlers-Danlos Syndrome AdvocateOnce I understood the reality of what I had been putting myself through, I knew I wanted to change my mindset. At first, I didn’t know how; but with the help and direction of Yasmin and Bri, I decided to share my story.

Through my social media accounts, I described my battle with Ehlers-Danlos Syndrome and outlined the goals for my future… even though I didn’t really know what they were yet. It was around that time that I informed my friends and family of my decision to raise awareness for EDS, and started my journey within the fashion industry.

Onward and Upward

Fashion, makeup, and photography were always passions of mine.

When trying to figure out which road I wanted to embark on, I tried to look for a positive platform; one that would encompass all that I loved and more! It was then, with Yasmin’s help, that I was urged to look into photography in order to incorporate pictures into the story I was already telling.

Sara Geurts - Ehlers-Danlos Syndrome Advocate

As a model with EDS, it was my goal to shed light on the unhealthy standards we have within the fashion and modeling industries. By showing off my differences, I hoped to help other women and men struggling with their own body image. I hoped to become an inspiration.

I feel our lines, scars, birth marks, and stretch marks tell the story of who we are and what we’ve been through. I believe they were specifically placed on us to fully encompass our uniqueness, our individuality, and adds to the work of art we call our bodies.

Society has altered our minds into thinking that we all need to be a certain kind of “perfect.” Whether that “perfect” be in relation to size, height, weight, color, eyes, etc.; I have made it my mission to try to change this.

The day I started this journey, Yasmin had helped me set up our first amateur photoshoot in one of the empty rooms in her apartment.

Sara Geurts - Ehlers-Danlos Syndrome Advocate

I was so excited but nervous all at the same time. I’d never shown my body or my disorder for that matter, and was very keen about always being covered up. I knew deep down I was still really struggling, and caught myself questioning my vision and what I was aiming to do.

My cousin was right there with me when I needed her most. She said, “This is what I have been waiting to hear from you for a very long time. You are ready. Your disorder is beautiful. It’s what makes you, you. Only you can change your mindset and love yourself.

For the first time ever in my then 23 years, I didn’t doubt her or myself.

Love Your lines

The Love Your Lines campaign (@LoveYourLines) focuses on praising imperfections. From stretch marks to scars, to discrepancies and birthmarks, anything is welcome and embraced. It is here that women and men are able to submit a picture of their ‘lines,’ and a story of their journey.

Once again, it was my cousin that encouraged me to submit my own.

On September 16, 2015, the LoveYourLines campaign published my story on their social media page. It’s a day I’ll never forget.

Sara Geurts - Ehlers-Danlos Syndrome Advocate

It was on that day that my vision of myself, my body, and my disorder, truly changed forever.

From the beautiful individuals that offered their kind words on my post, to numerous women reaching out and declaring the beauty I had revealed to them, it was all a spectacular experience. I felt like a whole new person. I couldn’t understand how I had hated myself, my body, and my disorder for so long. With every opportunity, I noticed my strength, growth, and transformation.

The previous year, I was a completely different person.

What Matters Most

Something that’s really stood out to me is the connections I’ve made with other individuals with Ehlers, and even individuals without Ehlers that look towards my social media pages for support, comfort, and inspiration.

Their continuous support is truly eye opening and means more than anyone could ever imagine.

Twenty years ago, none of this would have been possible. The internet was new, computers were new, anything with technology was new. That would have made my goals harder to accomplish and share with others.

I am thankful every single day to have the opportunity to connect with individuals from all around the world. That has been an experience in and of itself, and shows me to never take anything for granted.

The connections I have made are all so special and unique. They will truly last a lifetime. I am thankful for anyone and everyone that has supported me and only hope one day to meet each and every one of them.

Finding The BoPo Community

It wasn’t until about two years ago that I really started looking into the body positive movement. I can honestly say that I was at one of the lowest stages of my life.

With the movement, I slowly started to grasp and learn to turn the fire in my soul that was bringing me down, to the fire that would bring me up!

Of course it didn’t happen overnight. A lot of time and patience was needed; yet another quality I had become more acquainted with due to embarking on this journey.

I cannot stress enough the importance of this movement.

Sara Geurts - Ehlers-Danlos Syndrome AdvocateThis movement is vital not just for me, but for all individuals who struggle. Everyone should discover their beauty. Everyone should realize that beauty is not only found on the outside but more so on the inside.

This should be the real mission of the movement.

My own personal venture has been to connect with other individuals and lessen the suffering they feel towards themselves. I want to help alter their unhealthy mindsets; a mindset I once shared.

I feel there is not a single individual out there who can’t relate to some type of conscious or unconscious unhealthy mindset towards their bodies, or themselves as a whole. We all struggle. We all need the reassurance that we are not alone, and we all can relate to one another.

I think we all just need to take the time to take a step back from our judgmental views of others and focus more on bettering ourselves and our own mindsets.

Inspiration Is Everywhere

I am one who looks for daily inspiration whether that be in books, people, or even places.

Shaun D. Ross is one person I follow religiously. He started the major albinism movement throughout Europe and Australia, praising the uniqueness of those who have the disorder. He sometimes pops up on my Instagram, which really fuels the fire for my own endeavor.

Another figure I look toward for inspiration and encouragement would be Winnie Harlow. Winnie is known as one of the first female models to compete on Americas Next Top Model, whilst having a form of the skin disorder Vitiligo. She has now gone on to become a brand ambassador as well as an advocate for Vitiligo.

Lastly, I can’t forget the @LoveYourLines campaign, where all are welcome to share their scars and stories. It was here that my original motivation came. It made me realize that I am not the only one who struggles.

By finding and connecting with another individual going through something similar, your spirit can be restored. It creates a new connection to someone whom you can relate to. For all you know, that one new connection could be the start of a beautiful mindset and an even more beautiful friendship.

Today and Beyond

Now, more than ever, I am confident with who I am, and the disorder I have. I can’t express enough gratitude to my close friends and family that have been there supporting me.

I have made it my mission to raise awareness for Ehlers-Danlos Syndrome through photography, in hopes to make an impact. Bri is the main photographer for my photos. She helps capture the beauty I aim to make known.

Sara Geurts - Ehlers-Danlos Syndrome Advocate

I am not ashamed nor do I try to hide my disorder anymore. My disorder is a part of me and I wouldn’t change it for the world.

My physical traits are gentle reminders of the warrior I am. The lines and scars on my body are what make me, me. Each line holds its own unique beauty. Each one tells a story no one else has told. No one else bears the exact lines or patterns I have. This, to me, is the epitome of what I consider to be beautiful.

Deep down, I know God gave me this specific journey for a reason. I will not stop until my voice, the voices of our EDS community, and the voices of those who struggle everyday with the unrealistic standards society has put forth, are heard.

I will continue in my efforts to change society’s version of perfection within the fashion industry in the U.S and around the world.

My hope is that I will become one of the first published models with Ehlers-Danlos Syndrome.

Sara Geurts - Ehlers-Danlos Syndrome Advocate

Aside from that, one of my main life goals is to just be happy; happy with myself, my life, and all that I have accomplished, whether those accomplishments be considered big or small.

Long term, I hope to grow; not only within myself, but to aid others in their growth as well. I’ll always try to utilize what I know and how it can help others. We must keep open minds towards others and the different journeys that they embark on.

To constantly educate not only others, but myself included, on the ever changing diagnostics, types, treatments, and symptoms related to Ehlers-Danlos Syndrome.

Last but not least, I’m always aiming to improve myself, whether it be improving my body, my health, or my mindset.

Right now, I want to focus on my connections with others as well as forming a more immediate personal way of communication with them.

My followers and supporters are what keep me going. Honestly, I don’t know where I would be without them.

The aspiration to become one of the first published models with EDS fuels my soul to keep going and never give up. Though I am getting older, I feel my story is one that everyone can relate to in one way or another.

I know I’ve set the bar pretty high for myself, but I just hope it’ll give me the motivation I need to make sure I reach my goals.

From Sara, With Love

I’d like to thank you all for taking the time to read my story.

Sara Geurts - Ehlers-Danlos Syndrome AdvocateI hope you’re all aware of how truly beautiful and individual each of you really is.

Wear your stripes with pride, my loves.

Know that our community may be small, but we are growing. We are all here to support one another.

I wish you a day filled with love and many blessings.

@saraa.annmarie ♥ facebook.com/sara.geurts25
All photos taken by Briana Berglund

About Corinne Santiago

I have always been taught to love myself and want to inspire others to do the same through my writing. I am a puggle mom and a proud Ravenclaw residing in New York State and always rooting for the Mets.