28 Photos That Need to Be Shared During Ehlers-Danlos Awareness Month
May is Ehlers-Danlos syndrome (EDS) Awareness Month, so it’s especially important during this time to raise awareness and promote understanding of the condition and those who live with it. EDS refers to a group of connective tissue disorders, classified into 13 different subtypes. Since connective tissue can be found throughout the body, EDS can produce a wide range of symptoms and affect many different organs and systems – with some of the most common symptoms being joint hypermobility, fragile tissue and hyperflexible skin.
But Ehlers-Danlos syndrome is so much more complex than a list of symptoms; it can affect just about every aspect of a person’s life. In honor of EDS Awareness Month, we asked our Mighty community to share a photo that represents an aspect of their life with EDS they wish others better understood. The “zebras” in the following pictures are true warriors – but lending your support and a listening ear can be so meaningful. This month especially, let’s elevate the voices of those who live with EDS so loved ones as well as researchers and medical professionals have a better understanding of this condition.
Here’s what our community shared with us:
1. “Going in for my fifth right knee surgery a meniscus transplant. So far orthopedic issues have been most prominent. Five knee surgeries, one shoulder surgery and one wrist surgery with many subluxations and injuries.” – Kara L.
2. “Me last weekend at my favorite group concert, yes I was using my cane, yes I did have to take my meds in the middle of the concert and I did have to travel to another country to see them, but EDS patients look just like any other person, we can enjoy music, concerts and events, yes we have to be a bit more careful, but that doesn’t stop us from having an amazing time!” – Melissa O.
3. “Me and my hubby going out for the day. My life with EDS is challenging and not always easy, but with an amazing and supportive partner in life, I make it through just fine! I wish people could understand that EDS is a chronic illness, meaning I won’t just ‘get better,’ and because of that, I don’t want you to wait for that day to come to invite me to things or hang out! I want my life to be as close to ‘normal’ as yours is. I am a fighter!” – Catherine M.
4. “Fun leggings, because with the giant knee braces people are going to stare at my legs anyway! I wish people would realize that braces/ring splints/mobility aids do not turn you into public property. No, you do not have the right to ask personal questions of complete strangers. It’s rude.” – Jo H.
5. “EDS for me is a wheelchair, feeding tube and a service dog. In this photo I’m showing off my new chair that will give more freedom than I’ve had in a decade. Funny as it sounds, this chair actually helped me dance for the first time in years. I wish people would understand that EDS and everything else that it brings is hard as it is without people being so mean and judgmental. EDS is not ‘just bendy joints’ – for me it’s severe body pain, POTS and gastroparesis.” – Alexis M.
6. “EDS = fragile skin. I had to wear a heart monitor for two weeks and even with the ‘sensitive skin’ sensors, I still lost a few layers of epidermis. Ouch.” – Vanessa B.
7. “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.” – Kumar K.
8. “Me with my amazing dazzle of zebras who I’ve mostly met due to sharing this condition and I am proud to call them my friends. I am bringing a new EDS awareness video to my YouTube channel every week including all these wonderful people.” – Jenni P.
9. “EDS means wearing braces and walking with a crutch for me.” – Cara S.
10. “This was me at my old job as a bouncer that I had to leave due to my condition, I remember this night the photographer took a photo of me and I look happy, but in reality the muscles and joints in my legs were burning in unbelievable agony.” – Callum B.
11. “Last few years prior to diagnosis, the daily pill count was fairly low. The doctors were reluctant to prescribe when no one knew what the hell was wrong and all test results were clear. Fast forward 18 months, this handful of meds is what I take now on a daily basis. 133 tablets a week. It’s not nice relying on medication. In the beginning it was one of the hardest battles I had with myself. I was in my mid-30s, not my 90s! I resisted using pain relief as much as I could – I guess it was my way of fighting back against the disease. It took a long time to acknowledge that taking the meds was not a sign of defeat but that they helped my body. They allowed me a little normality in each day, even if only for a few hours, where I could do the things I used to be able to.” – Karen E.
12. “She makes EDS work for her.” – Shannon C.
13. “Being able to do ‘party tricks’ like being able to touch your nose with your tongue and realizing that it’s not normal. My identical twin has an EDS diagnosis but I’m having a hard time getting one myself partly due to ignorance in the medical world like the doctor who told me that EDS is asymptomatic and not to worry about it.” – Erin P.
14. “My neck is unstable. I had to get it fused from skull to C2 about a year and a half after my Chiari decompression. I am almost six months post op. This is my hardware as seen on a 3D CT scan. I have a lot of pain on the right side. It’s really hard to shop, back my car up, talk to someone who is sitting next to me, look for cars before crossing the street, look at things over my head (bookshelves, changing light bulbs, airplanes flying over…), but I can hold my head up for longer. I have the feeling I’m going to need more fusions in the future.” – Megan M.
15. “Here I am relaxing on a soft rug with several joints out of place and pink and purple dysautonomia skin. It’s the morning after one of those days where I stopped counting how many joints I put out. I pushed on anyway and ended up hurting too bad to sleep. Sometimes on days like today I’m able to get myself back in place, exercise and go about my business, but sometimes I can’t.” – Kyra S.U.
16. “Me with my service dog.” – Andre B.
17. “Still being cool and having fun while trying not to die! This was actually a special day because I rarely get to leave the house. I need help, I need heavy mobility equipment that doesn’t fit in my car, too much activity gives me severe headaches because of my craniocervical instability and I have severe, life-threatening allergies to basically anything with a smell. I actually had to sit in the car at Krispy Kreme while my husband went in to get our donuts. But I made the best of it with my cool new hat, as you do.” – Jill D.
18. “Very few people understand the accomplishment this is. My dream! I got paralyzed in my sleep when my spine dislocated. Doctors say I will never walk again, and this will happen again so I have to be careful. I’ve always rehabilitated animals with behavior issues (horses, dogs and cats). My joints dislocate daily, poor balance and coordination, pain etc… nobody sees that I have to have someone by my side when I ride when my joints dislocate or I get paralyzed. I’m very affected by EDS, but I still live my dream and work with animals, big and small, easy and tough. EDS is a tough illness to live with, cope with and manage. But I’ve learned so much by having EDS, that I would never get to experience or learn if I didn’t have it. I’m grateful for what I’ve learned and what I can achieve even with EDS. I live my dream and will never stop, even if I get paralyzed. Then I just have to live my dream from a wheelchair.” – Tessan B.
19. “Having EDS and another rare disease called PVNS [pigmented villonodular synovitis] but being the best mummy I can be to my daughter. I’m in chronic pain all the time but this miracle baby of mine keeps me going every single day. She’s my world!” – Vicky G.
20. “The not-so-invisible bit of EDS type 3.” – Manasi D.
21. “My mom, boyfriend and father supporting me before my skull-C1-C2 fusion and decompression surgery. They surprised me with these T-shirts and came all the way to Maryland to be with me. My grandparents drove all the way there and were a huge help too. I want people to understand that life with EDS is hard. We can smile and pose, but still be dealing with debilitating symptoms and several comorbidities. Having support through all this is really key and makes a huge difference. Not just support on the big surgeries, but support through the long recoveries and daily battles too. It’s hard to ask for help, but that doesn’t mean we don’t need help. I also met another Zebra at the hotel and we got to chat for a few hours the night before. This support was really encouraging, calming and much needed. In other words, don’t forget to support your Zebra friend. It means more than you could know.” – Mahala H.
22. “From hospital trips, IV drips, bruises, bendy hands and braces – my life with EDS has been nothing short of interesting and intense. We Zebras are not one-size-fits-all – we all experience it differently, but we understand one another better than anyone else ever could.” – Emily R.
23. “EDS stops me from doing a lot of things I’d love to do. Even things I need to do. I end up on the couch a lot. But I’m really good at cuddles.” – Kari R.
24. “My service dog Rembrandt and I, after passing our one-year post-placement test. He’s been a source of excitement and joy in my life.” – Courtney M.
25. “The blood vessels in my legs burst sometimes… I always know when it is about to happen because it has an intense burning itch sensation. This is my life with EDS, random ugly bruises.” – Ashley M.
26. “Lying down trying not to pass out. My meds mixed with dysautonomia sometimes causes my heart rate to plummet. It’s very scary and can happen any time. All I can do is get my electrolyte solution in me and wait for it to pass.” – Melissa A.
27. “Faking it… same day hours apart.” – Stephanie L.E.
28. “Me and my three kiddos have it and handle it as gracefully as we can.” – Tameka F.