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
Hi, my name is Lisa, and I’m a storyteller. I am a Public Artist with ArtworxTO for The City of Toronto for 2021. I’ve worked as an actress, a filmmaker, and a theatre and film producer. Since my illness took over in 2008, I have been exploring my creative passions in the art world. I View page
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
I am 54 years old. Last week I just got the diagnosis that I was begging, even crying out to find. Ehlers-Danlos syndrome. Sounds like a complicated name. Of course, telling your family for the first time is like, “You’ve got a problem with your ear? – no dad, E-H-L-E-R-S, not EAR!” What the heck View page
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
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
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
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
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
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
