sara geurts modeling in red top on a balcony outside

I’ll start out by saying I was not always comfortable or accepting of my disorder, Ehlers-Danlos syndrome, or the effects it has on my everyday life. 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. I was diagnosed around the age of 10 but had noticed my skin as early as the age of 7.

sara geurts modeling in red top on a balcony outside
Sara Geurts

My sagging skin was my biggest insecurity, amongst other side effects. I would later learn this was due to the rarity of my type. As I got older, my discrepancies started to show more and more. The majority of people who had noticed assumed I had gone through some type of weight flux, which resulted in my “stretchy skin.”

Again, I was not always comfortable with my Ehlers. I more often found myself hurting my body rather than helping it, both mentally and physically. Around the age of 23 I had started a relationship before fully acknowledging my disorder. My insecurities with Ehlers created a major barrier, which ultimately led the relationship to end.

This would be one of my greatest lessons ever learned. I just didn’t know it yet.

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. I observed that hating certain parts of myself and body triggered my unhealthy mindset, which others sensed as well. This outlook transferred into a majority of my friendships/relationships, which then made them incapable of reaching their full potential.

I promised myself from then on I was going to be true to myself, love my body, love my disorder and most importantly, love myself.

I looked to photography as a way to pursue and nurture my new mindset. After acknowledging the parts of myself I hated and shunned, my mentality slowly began to change, and the beauty within my flaws slowly began to appear. Not only did I recognize change within myself, but I started to think more and more about photography and art. How could I use my story and revelation to help others?

My cousin, Yasmin, and best friend, Briana Berglund, were the ones who really helped me (as well as other amazing close friends and family). I informed my friends and family of my decision to raise awareness for EDS and start my journey modeling with my disorder in the fashion industry. I also decided to share this with on personal social media accounts as well.

My goal is to shed light on the unhealthy mindsets we currently have within the fashion and modeling 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!

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. “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. We are our own real life warriors. Our bodies tell a story that no one else has, a literal vessel of the struggle we as individuals have gone through – a vessel to be praised, not shunned.

My mission is to show the world my own imperfections to aid others on the journey to self-love. Real beauty lies within ourselves. The beauty only seen on the outside doesn’t count, but what matters most is on the inside. By reinforcing the mindset that our imperfections are real and beautiful, I hope to lessen the journey and struggle of others on the road to self-love.

I hope to be an inspiration to others and open individuals’ eyes to the true beauty within themselves.

When I started my journey I knew I was struggling and knew I needed someone to help me break through. Yasmin was with me. I stated how unhappy I was, how I wanted to try to love myself and learn about my disorder – I just didn’t know where to start. Her statement to me changed my attitude. She responded, “This is what I have been waiting to hear for a very long time. Your disorder is beautiful. It’s what makes you, you. Only you can change your mindset and love yourself.” I had heard statements like this before, but for the first time ever, I didn’t doubt her.

sara guerts modeling in a black and pink bikini
Sara Geurts

This is when the Love Your Lines campaign presented itself. This campaign focuses on praising imperfections. From stretch marks to scars, from discrepancies to birthmarks – anything. It is here women are able to submit a picture of their imperfections and a story of their journey. My cousin urged me to submit mine.

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

It was here my vision of myself, my body and my disorder changed forever, and I can honestly say I am the happiest I have ever been in my life.

From the beautiful individuals who offered their kind words on my post to numerous women reaching out and declaring the beauty I had revealed to them, it was 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 transformed perspective.

Now, more than ever, I am confident with who I am and with my disorder. I have made it my mission to raise awareness for Ehlers through photography in hopes of making an impact. I am not ashamed, nor do I try to hide it anymore. 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 believe deep down that God put me on this journey for a reason. I will not stop until my voice and the voices of the EDS community are heard, and I will continue in my efforts to change society’s visions of perfection within our fashion industries in the U.S. and around the world.

I aim to be one of the first recognized models with Ehlers-Danlos.

Wear your stripes with pride, my loves. Our community may be small, but we are all here to support one another. I wish you a blessed day filled with love and many blessings. Thank you for taking the time to read my journey, and I hope to meet you all one day. #ZebraWarriorsUnite

Feel free to reach out to me on Facebook or Instagram or email me at [email protected]. I’d love to hear from you!

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I’m a total hermit. Even before I was diagnosed with Ehlers-Danlos syndrome, I have always loved being home. So, when I fly by myself across the country to visit my family, I’m a little anxious. Luckily, I have some experience. There are a few ideas that really stand out to me – helpful reminders to save my energy and prevent ruining my trip before it starts.

1. Ask for help and accept kind offers.

I know my support system often feels helpless, so when I say yes to their offers, it is a win-win situation. I don’t totally exhaust myself doing something unnecessary, and they can take a little control of something that almost always feels so out of their control.

I used to be stubborn… clinging to as much independence as possible. Why? What was I really proving? I do, in fact, need help sometimes. I’m learning to embrace it. Even strangers like to do their part on occasion: holding a door, reaching for a high object on a shelf, asking to lift my carry-on bag into the plane cabinet. Say yes, please, and thank you with a smile! If someone does not offer, ask anyway. The worst that can happen is the person says no and you move on.

2. Come prepared.

Really think ahead of anything that may come in handy if you by chance flare during the trip. Make a checklist. Pack early. Plan ahead as much as possible.

My basics to bring on my travels include: medications, braces/wraps/slings, compression socks, super comfy clothes, KT tape, heat pads (electric and those adhesive ones when in-transit), travel pillows (one to sit on, one for my neck, and one for my back), mobility aids (my cane and wheelchair), and anything else that you use regularly… Better safe than sorry.

3. Know the services that airports have available.

Airports have ADA services, and you should absolutely use them. I’ve found that the staff tends to be awesome and accommodating. I have had great experiences. One of the most important resources I used at airports is the wheelchair service. I have my own personal wheelchair now, but before that, I quickly realized I could not handle the insane amount of walking required in airports. When you check in for your ticket, you can ask to borrow a wheelchair and an aid to push you – for free! (You should set this up before arriving, if possible – I added on the service when I bought my tickets online.) They will take care of your bags and get you all the way to the waiting area for your flight. Show up earlier than usual to use this service. Also, if you can afford it, the staff is allowed to accept tips.

Some flights allow one passenger to bring a personal wheelchair on the flight as carry-on in the cabin. You need to inform the flight attendant as soon as you check into the waiting area to ask if the service is available and you should bring wheelchair instructions for how to fold/handle your chair. I’m also in the habit of printing off the airline’s rules on these matters, in case a staff person is not informed of the policy.

4. Choose your seat wisely.

You know your condition… and how close you need to be to the restroom. If they give you the option to select your seat when purchasing tickets, put some thought into the spot that will be best for you. Perhaps it would be helpful to have the window seat, in order to have a wall to lean against. Or, if you know you will have to get up many times to go to the restroom and want it to be as easy as possible – not needing to squeak through the tiny space between seats, consider the aisle seat.

Take advantage of early-boarding. I used to feel like I wasn’t disabled enough for this… and would proceed to torture myself waiting in a long line of passengers. It’s not worth it. Obviously, if you can afford first-class seats, that’s your most comfortable option, since there tends to be more leg room, easier bathroom access, more snacks/drinks, but I know that’s not always financially possible.

5. Living away from home.

Try to make plans ahead a time to know you will be well taken care of. This really depends on whether you are staying in a hotel or a friend/relative’s home.

Hotel Life:

Consider whether a room on the first floor will benefit you. I know with my wheelchair, if I can avoid elevators, I absolutely will. Or, if you are on a higher floor, think about the distance to the elevator, which can cut down on the amount of walking. Most hotels will easily accommodate you on these issues. You should look into the hotel’s amenities online before booking. You could find a hotel that has a pool or hot tub help your pain management/physical therapy. Look for a hotel that has a free shuttle to the airport or a hotel with a restaurant on-site (even room service) in case you’re having a really bad day and are unsure if you can leave.

Staying at someone else’s house:

Chances are your host cares about you being comfortable guest and is aware of your illness before inviting you. Ask where you will be sleeping and plan accordingly. You may need to ask for extra pillows or for the host to place your food on a certain shelf. But, also keep in mind there’s only so much your host can do. Being away from home can be hard. Keep in mind that having a guest stay at your house is stressful though, too.

Another thing to consider is what food is available. You may ask your host for some specific items or it might just be easier for you to go with them to the grocery store soon after arriving. Chances are they are already planning on buying food for your trip, so they probably won’t mind if you add a couple special items to that list. I know a lot of chronic illness patients have very special diets, but there comes a point where we kind of have to take care of things ourselves sometimes, especially if your diet has very specific needs that are easy to mix up.

6. Don’t plan too much.

Keep your trip a bit flexible. Traveling is special, and I know we want to fit in every little thing. That’s just not possible – you’ll probably wear yourself out, maybe starting to flare in the process. I would try to avoid having a plan every day, if possible. Plan for off-days during your trip reserved for relaxation. That doesn’t mean you have to sit around bored doing nothing. Maybe have a day to do a puzzle or play games with your family, low-energy, easy activities. Those can be the best days. Know and accept your limits.

7. Be ready to educate.

When you are around people you don’t see often, they may be surprised if your condition has worsened or just have a lot of questions. I usually only see my family once a year. I could walk without any assistance last visit; this year I need to use a wheelchair some days. Instead of letting this come as a shock and explaining myself a million times, I tried to prevent some questions ahead of time by addressing it on social media before my trip. I wrote that with my limited mobility, I won’t be able to see everyone, friends may need to come to me, I may need to cancel plans, and I’ll be using a wheelchair sometimes. I try to be fairly open about my illness, but at the same time, I really don’t want it to be the focus of my trip.

8. Make time for yourself.

If you are like me, I’m used to quite a bit of me-time. Self-care is a crucial part of my day. If you need some time, take it without regret or apology. You do not need permission for a break. It will make your trip so much better if you follow your usual steps, trying to be as preventative as possible. It may seem like you are “wasting” precious time that could be spent on travel activities, especially if the self-care requires you to be solo, but you could be setting yourself up for failure if you just try to keep pushing through. Follow your instincts. Trust your body. Sit down. Take naps. Go to bed early. Do whatever you need to make the best of your trip by taking care of yourself.

9. Enjoy!

Holidays are difficult sometimes. I do a lot of reflection around this time of year, which makes it very easy to focus on how much my life has changed for the worse, on how much I can’t do anymore. Your vacation is not a good time for a pity-party. Think about what you can still do (easier said than done…I know). Find things to be grateful for. Smile a lot. Have fun, despite your illness. Take a bunch of photos (so you can remember the good times regardless of brain fog). Create some special memories that will carry you through to your next vacation. Celebrate all the love and support that brought you to your destination in the first place.

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Lead photo by Thinkstock Images

I am an equestrian. I also have Ehlers-Danlos syndrome. My joints dislocate, my head spins, my blood pressure malfunctions and my body fights my every move. I have ridden horses since I was 4 years old, but 15 years later I realize I am not the same rider I was before my diagnosis. I have had instructors tell me, “It’s all in your head – your shoulder can’t be dislocated,” or “Maybe you should consider competing in the category for people with disabilities.” Despite not being supported by my family, instructors or, quite frankly, my joints, I keep riding. I keep saddling up and doing as much as I can until my body gives up and I need to stop. That could be 20 minutes or two hours – it all depends on that day, that minute.

author riding on her horse

I want people to understand that what I face is real, that EDS is painful and a mountain I need to climb each and every day of my life. My horse means everything to me; she is my world and I give her everything I can. To the trainers who have told me I’ll never be like the girl next to me in the warm-up ring and I shouldn’t expect to do well in the show, I want you to know that I know I’m different. I know the other people in my division probably don’t have a disorder like EDS. I know I’m the underdog. But I also know I am not a quitter. My body may fail me but I will do whatever it takes to cross those finish flags.

And to everyone with EDS struggling to learn your limitations: don’t give up on what you love. It won’t be easy, but there are always ways around. Maybe you won’t get the highest technical scores because your position is modified or maybe you won’t run the fastest or jump the highest. But you ran, you jumped, you took the time to modify your position and you crossed your own finish line. So know your limitations, wave at them standing beside you and carry them with you as you complete your goal.

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Editor’s note: The Ehlers-Danlos Society does not recommend performing or showcasing hypermobile “tricks” as this can cause long-term damage to the joints.

What do the Ehlers-Danlos syndromes “look like?” It’s a question that can have many answers. Some symptoms of the 13 types of EDS are visible; for example, hypermobility and easy bruising. Other symptoms aren’t so visible, like chronic pain, organ rupture and co-morbities like postural orthostatic tachycardia syndrome (POTS). But whether your symptoms are visible or invisible to others, all are valid and all can be misunderstood by people who may not understand the effect these symptoms can have on your life.

We partnered with the Ehlers-Danlos Society to ask our Facebook communities to share a photo of what their EDS looks like. It’s clear that while there are many similarities in how EDS presents itself in different people, there is also great variety — and so many of an EDS-er’s health challenges are not easily seen by others. An EDS “zebra’s” physical symptoms may be hidden, but their courage in facing this condition is clear.

Here are the photos they shared with us:

1. “What people cannot see. What we conceal is not obvious to the rest.”

girl wearing black dress showing knee brace

2. “With EDS you never know how you might feel in the next few hours, the next day, next week, next month… You might be able to walk, dance, and the next you are so weak and in so much pain you cannot leave the bed. People judge when we are seen walking after parking in a special parking space.”

black and white photo of girl standing and of her sitting in wheelchair

3. “My little zebra warrior type 2 and 3. Diagnosed at 7 and me at 40 last year. I have had problems since age 2 but not diagnosed until many years after having my son. I was always just that clumsy, accident prone kid.”

boy demonstrating stretchy skin and bending back his wrist

4. “Most people wouldn’t assume I’ve had multiple shoulder surgeries, including a total reconstruction, and countless spinal and nerve-related procedures to control pain. No one would guess that I am in practically intolerable pain day in and day out. EDS doesn’t necessarily look like anything on the outside. It looks like you and me!”

woman wearing gym clothes making a fist to show off bicep

5. “One of my three sons, who all including me have EDS type 3.”

young boy showing hypermobile elbows

6. “I [experience] subluxations, migraines (just got over a 13-day one) chronic pain and a fair few other bits. People always say ‘you don’t look disabled.’”

selfie of woman standing by window

7. “This is what Ehlers-Danlos syndrome looks like. A seemingly healthy person who had already experienced several dislocations by the time this picture was taken that day.”

woman standing in library

8. “In spite of all the silversplints on the left, still being able to do the thingy on the right with ease. Just shows how easily my MCPs and PIPs manage to dislocate right through the splints. They do some good but don’t keep the joints in place completely.”

fingers with silver splints

9.Easy bruising. I leaned against furniture while rearranging my basement. Next day my legs looked like this. I get a lot of large ugly bruising with no pain or recollection of getting them.”

bruises on legs

10. “For me, it means wearing my braces and wraps and tape even when I hate getting strange looks, questions, and comments. Protecting my body so I can be the best mom I can be is so important, but it’s not easy. Moments when my disease gets to be just a part of me, instead of the most obvious part of me, are the best. Here I am with my husband at my best friend’s wedding.”

woman wearing neck brace with arm around husband

11. “The not-so-invisible bit of EDS type 3.”

woman standing on boat wearing sling on arm and tape on knees

12. “People always ask how my skin is so radiant being a male. They believe I look awesome. But reality is different. Having your veins visible is not sign of beauty, it’s sign that you [might have] EDS.”

man sitting in car

13.EDS looks like strength, determination and willpower. It looks like the ability to get past everyday chronic pain and still live your life to the fullest. It looks like the ability to hear people tell you that you ‘can’t do that’ or ‘will never be able to become that,’ and then find a way to prove them wrong. This picture was taken less than a month before my fifth surgery to replace and repair tendons, ligaments and muscles that continuously fail in my shoulders and back. But I found a way to live my life that day.”

woman standing on log in woods

14. “Ehlers-Danlos syndrome vascular type because it’s not just about hypermobility. This was me after an operation to replace a dissected aorta last year. The operation saved my life but left me with permanent paraplegia. Vascular Ehlers-Danlos syndrome completely changed my life.”

woman wearing mask over nose and mouth in hospital bed

15. “My three handsome guys, my little EDSer is in the blue, can’t you tell.”

father with arms around two young boys

16. “Bending all the wrong ways. (This is an old photo, please don’t do ‘tricks’ like this just for fun.)”

woman sitting on floor bending her knee back the wrong way

17. “Classical EDS… sorry for the picture, but it is my reality.”

woman's legs with bruises on knees and thigh

18. “Spoonies feel they have to hide for fear of judgment from the able-bodied community. I have regular IV fluids for POTS caused by my EDS, regular scans on my heart to check it is still working fine, regular nebulisers because my immune system can’t handle something as simple as the common cold. I have to strap most of my joints in a feeble attempt to keep them in place. And I do all of this without most people noticing/I’ve got so good at faking it that people don’t notice I’m sick! All they see is this.”

photos of girl wearing oxygen mask and iv next to photo of girl wearing a black and white dress

19.It’s not an optical illusion; this is my connective tissue failing to hold me together properly. Sometimes I try to imagine what it would be like to be able to to trust my body. How wonderful it would feel to simple stick my hand out of the car window and let my fingers ride the wind…”

elbow bending backwards

20. “HEDS isn’t just bendy joints and stretchy skin. I have multiple failing organs from it and am fed through my veins!”

girl standing next to iv pole in kitchen

21. “So many tests. Wires all over the place all the time. This time a 96-hour EEG to try to get answers for a very scary ER trip two months ago. Yet I’ll still get dressed to hide it so no questions just like with any other thing. Just like most I’ve done this with a holter monitor, braces, and kt tape to conceal what’s really going on to appear ‘normal.’”

photo of girl wearing bandage on head and photo of her wearing a hat and scarf

22. “Three generations of EDS together. My Nan is 96! We all look OK, but we all have our problems. They just aren’t always obvious.”

grandmother, mom and daughter by couch at party

23. “Old pic but they still do the same thing… dislocated and twisted round… no pain from this, but my hands do feel tight and they are by far the least of my problems with EDS.”

hand on newspaper with pinky bending the wrong way

24. “My 19-year-old son Caleb carrying a full cup of coffee. This is natural/comfortable to him. If the outside can do this can you imagine what the inside looks like?”

wrist bending the wrong way holding a mug of coffee

25. “Both taken on the same day.”

woman standing connected to monitor with wires and wearing boot, next to photo of her without any visible symptoms

 25 Pictures That Show What Ehlers-Danlos Syndrome Really Looks Like

When I was 6 years old I fell off my bike, and I cried so much that my dad had to carry me inside. For the next few days, I walked around with a bruise on my side that was as dark purple as my bed sheets, and I remember wondering if it was normal for the bones in my chest to hurt when I breathed.

When I was 7 years old I was watching TV when my neck cracked and froze itself that way. I couldn’t move my head for a couple of days, so my mom took me to the doctor, and he pulled my neck away from my shoulders while my parents held my arms and legs down, and I cried because it hurt so bad, but I felt my neck pop again and then I could move. The doctor said, “That’s unusual,” but never did anything about it.

When I was 8 years old I was super excited to go to a “real school” and see if a homeschooled kid like me could handle the classrooms and teachers, but my joy was short lived the first day I came home with a headache so bad that I had to lay down before the sun had even gone away. Almost every day for the rest of the year, I remember that icepick in the back of my head, in front of my eyes, near my ears, resonating from my jaws sometimes, and it wasn’t until the summertime when I got a migraine so bad that I threw up from the pain that we went to the doctor. He checked my eyes and told me I was fine, that some people just get headaches sometimes.

When I was 10 years old my family went for a hike in the mountains and the pain in my knees was so bad that night that I couldn’t sleep so I got up and asked my mom for some ibuprofen, which didn’t take it away, and she thought they were just growing pains, but I didn’t grow an inch that year.

When I was 12 years old I taught myself to play piano because I decided I wanted to play my favorite songs on an instrument I loved, and I practiced constantly, until my fingers ached, but “constantly” started turning into “hardly at all” on the days when the pain was so bad I couldn’t even learn half of a new song.

When I was 13 years old I asked for a guitar for my birthday, and I got one that would fit me (not full size), and I thought I had found the world’s best instrument in those beautiful, metal strings, but it wasn’t long before I had to set it aside to take a break, when my fingers would give out on me and give way to more and more pain.

When I was 15 years old I ended up in a mental hospital because the anxiety had gotten so bad that I didn’t know any way to control it except by threat of death, and the pain in my joints didn’t bother me so much back then, even though I could barely write or draw or properly hold a pen. I didn’t care to tell the doctor about how I felt sick all the time, but when they sat me down, they told me all was well. Some teenagers just take life too hard and when I get older it’ll all get better.

When I was 17 years old I got so sick in January that I couldn’t even sit up or drink water, and every joint in my body was swollen and hot and I lost track of how many times I threw up, and when we finally went to the doctor a week after the worst of it had passed but the joint pain had stayed behind, she wrote in her notes that I was just lying. That I was just seeking attention in a world where all the attention was on somebody else, but I still could hardly walk and it took another week of drinking grape juice and eating crackers before I could finally hold down my food again.

When I had just turned 18 years old I went on a roller coaster ride because I didn’t want to be the only person too scared to go on it, but halfway through there was a pain in my body that I couldn’t quite place until I calmed down from the panic attack the ride had caused me. My shoulder cracked three times like the same sickening sound my neck made, and using my arm was a 9 out of 10 on the pain scale that day, and then I started to wonder if that’s what it felt like to dislocate.

This is the life of someone with Ehlers-Danlos syndrome. I’ve been sick since I was born, and I really don’t know any other way to be. The Get Well cards stopped coming long ago, or in my case they never even came, and people have a hard time believing I’m sick when I keep living my life, but they don’t see the little, isolated incidences where my days are laced with pain that would take an able-bodied person to the ER.

EDS can cause dislocations, chronic pain, anxiety disorders, panic attacks, stomach upset, migraines, and so much more throughout a lifetime, but EDS isn’t a virus that we get. It isn’t something that shows up as a teenager. It is a lifetime disorder. It is how we are born. Just because we might not look sick doesn’t mean we aren’t sick; it just means you’ve never seen us looking healthy because this is all we’ve ever known.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

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Thinkstock photo by mood board

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