Published: 19/06/2018 Tags: The Ehlers-Danlos Society News

Fragile, but Unbreakable! Ehlers-Danlos Society Instagram Contest Winners Announced

June 19, 2018 — The Ehlers-Danlos Society is excited to announce the winners of our awareness month Instagram contest, #FragileButUnbreakable!

With over 2000 entries, generating over 30,000 likes, each entry accelerated awareness, spreading stories of strength and hope, passion and progress to friends, family, and fellow EDS/HSD zebras throughout the world.

Each of winners sought to educate others about living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders through the challenges they endure and the victories they achieved throughout Ehlers-Danlos Awareness Month this May—and they did some incredible things.


Christina Doherty held her own Instagram contest to spread her traumatic diagnostic journey with thousands—and encouraged countless others to share their own stories of diagnosis and discovery.


“8 years. Thats how long it took from the day I started searching for answers to the day I received my diagnosis. For 8 years I was told I had anxiety, I was told I had an eating disorder, I was told I had IBS, I was told I had exercise induced asthma, I was told I had TMJD, I was told I have cyclic vomiting syndrome, I was told I had Myoclonic Seizures, I was told I had vestibular weakness. And then I was finally told that what I really had was EDS. 8 years of medications I never needed, unnecessary tests that left me permanently scarred, and 8 years of the never ending guilt that maybe it WAS all in my head. A big part of my life was stolen from me when I was just 9 years old. This has to end now! How many more lives need to be stolen away in doctors offices looking for answers? Early diagnosis needs to be the future.”




Brianna Erdman shared a powerful painting highlighting the many challenges that zebras may face.


“Zebra Painting by Me for the #fragilebutunbreakable contest!







Stephanie Goettl Vander Pas spoke at an awareness event and used her own health challenges that occurred on that day to highlight what it is really like to live with EDS.

“Today, I attended an EDS Awareness Walk, something I’ve been planning for and working towards for some time now. It’s been a huge goal and I was SO EXCITED to get there.I had an amazing chance to share what EDS is to a better than expected crowd. I did what I do best and put that in the context of my own life and I was thrilled at the response.

This photo, though, is the reality of EDS for me. I’m smiling and acting silly but truthfully I was devastated in that moment. I’d been using my smart crutches in that hot sun and less than halfway through the walk, I had to sit down and wait for the group to do the loop portion of the walk and then crutch back to the park. I was tired, in pain, and I just really couldn’t do it.

I felt like I failed. Even as we walked over the bridge I told my mom and dad that I used to walk five miles a day without any help and now I can’t walk ONE with my crutches—and that all the people who gave money thought I was walking that mile.

So, here’s the truth to all of you who gave money. I couldn’t walk a full mile. I don’t know if I’m ever going to be able to. I’m hoping and praying that the money you gave me and that doctors find a way to make that possible.

BUT, at the very end of that speech, I talk about how believing us is the most important thing you can do—and all of you have done that and it’s worth far more than any dollar amount.





Lacy Chambers’ husband Dallin ran a half-marathon decked out in full zebra to raise awareness about EDS.


“Look how happy he is! He just finished a half marathon to raise EDS awareness!” 






Jenni Pettican created a series of widely shared EDS awareness videos on YouTube.


“Have you guys watched my EDS Awareness Month Videos yet? Well what are you waiting for? Head over to my Youtube Channel (link in bio) 4 are already up, 1 is uploading and should be up by the morning (the wifi is soo slow at home) and there are 2 more to fit in before the end of may! So maybe subscribe and it’ll let you know when shiny new videos arrive!”




Meg Makiej used her senior studio project to create powerful EDS awareness art.


“My senior studio project, an Ehlers-Danlos Syndrome Awareness Campaign came to an end on Thursday with the final reception. I cannot believe that it marks the end of college for me. I hoped that I would be able to bring about awareness for EDS and just by doing and presenting the project, I did just that, so I guess it would be considered a success.”





Thank you to everyone who entered our contest and did your part to spread awareness during the month–and beyond. Be sure to follow us on Instagram @ehlers.danlos!



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Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

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