Tag Archive: Ehlers-Danlos syndrome

My twin sister and I fought to be believed

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
View page


Lane's streaming logo, DisabledGooru

How my gaming career helps me to raise awareness for EDS

My name is Lane Cooper. On October 23, 2016, I was stacking firewood with my uncle, when I went home I started urinating blood. I went to the ER and was diagnosed with autosomal dominant polycystic kidney disease (ADPKD), which started my medical decline.  A few months later I started having a lot of pain
View page


yasmin smiles at the camera as she climbs a rocky ledge

Rock climbing had held my joints together, until the pandemic came

From a young age, I had various injuries and health concerns. We knew I was hypermobile but this was never linked to any other concerns.  I began rock climbing at age 20. I had never been able to exercise without feeling self-conscious or ridiculed for my lack of coordination or ‘effort’ due to fatigue. But
View page


a selfie of moira

With diagnosis, I can tackle my symptoms more efficiently

I was diagnosed with EDS after two years of doctor visits and a lifetime of unrelated health problems. Originally, I was searching for the reason why my chronic pain syndrome started after a bad car accident in 2019. My body seemed to get weaker and weaker, my joints seemed to collapse in on themselves, and
View page


vanessa f story

I’m newly diagnosed with EDS

After decades of dealing with quirky, what I thought were unrelated, health issues I was finally referred to a specialist in Boston. Last month, after a thorough evaluation and review of my history, my geneticist diagnosed me with a connective tissue disorder known as Ehlers-Danlos syndrome (EDS). Not only does this diagnosis account for the
View page


caitlin walking towards the camera with her thumbs looped over her pockets

I love to share my EDS and mental health story

I have always been hypermobile, had elastic skin, joint pain, and lots of other common symptoms of Ehlers-Danlos syndrome. However, I was not diagnosed until I was almost 16 years old after a major sports accident. The accident caused a patellar dislocation with a torn meniscus, a slipped disc in the lumbar section of my
View page


A selfie of Christie smiling at the camera

Learning to climb the ladder of life again

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
View page


genevieve is taking a selfie, while holding an IV pole

My lightbulb moment

The first sign that something was wrong was my ankles. Anyone walking behind me could see that my feet wobbled as I walked. As a kid, I didn’t realize this was wrong, and I thought that everyone’s feet hurt after walking for 15 minutes. I went to the doctor, and they told me to get
View page