At 5 years old I remember my thumb and hips popping in and out of place. I would be in horrendous pain but I would keep it to myself. Then I would chat with my identical twin sister then we realized that our pain was very similar. At around the age of 13, I decided
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I, like many working people, especially working mothers can do what I call ‘struggle with the juggle’ of everyday stress, demands, to-do lists, and overbooked calendars. Then add on chronic illness and it can feel like an impossible life. How can we possibly keep all of the moving balls in play? I dropped my juggling
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After 30 years of the unknown, I finally got an answer. One night my husband was watching Ninja Warrior and heard a story of a woman with this rare condition. This was after years of going to doctors and him coming home poking me to see if certain things hurt when he finally got the
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It would take me hours to tell my story fully. But here is a start. One day just before Christmas I got up off of my bed and felt excruciating pain in my knee, I went to the emergency room and because I could still move my knee they sent me home. A few months
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“Wait, you can’t have Ehlers-Danlos syndrome… can you?” So, luckily for us EDSers, medical professionals out there are slowly (oh so slowly) starting to recognize the struggle we have with this chronic, genetic, faulty collagen, pain-fuelled condition. Many don’t understand it, some even deny its very existence, but a few have embraced the need for
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Hi, my name is Emma and this is my story of living with EDS. Growing up I had no idea why my legs felt the way they did. My mom has multiple sclerosis and one of her symptoms is that her legs are very painful, so when I was little I would tell my parents
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My mother and I were diagnosed in tandem. My mother was 39 but looked 19, living a life in chronic pain with constant joint instability. I was 6, and sitting in the doctors office in a W banding my fingers backwards so my hand looked like a skydiver. In the 23 years that have followed
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My name is Reavie and I am 16 months old. My mom and dad had never heard of EDS before they had me, although it turns out my mom has it too. We knew something was up when at 6 months, before I was crawling or even rolling around, my arms were covered in bruises.
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I have a hundred stories about my diagnosis, my dislocations, my inability to take meds, my stabilizer braces, but today, my story is about having that one friend who keeps you going when your body won’t go anymore.
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Thanks to a great community of other Zebras sharing their experiences and talking to me about my worries the hopelessness has been getting much better. They can’t fix me but at least they help me look on the bright side and make me feel like I am not alone.
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