Tag Archive: Dysautonomia

I didn’t want to be treated differently

I’m Evy and this is my EDS story. I was diagnosed with hEDS when I was 10 years old. Leading up to my diagnosis, my pediatrician was suspicious because I had some symptoms such as scoliosis, Idiopathic Thrombocytopenia Purpura (ITP), hernia, flat feet, flexible joints, digestive issues, etc. It took a few years, but I […]
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15 years too long

The irony of living in close proximity to Boston, MA, a city known for its medical advancements, is that with all the world-renowned care I sought, it still took over 15 years to finally have some answers. My name is Victoria, and I am a 26 year-old full-time Doctor of Pharmacy candidate in an accelerated […]
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Discovering my own diagnosis

I’m Ashley, 34 years old from Canada and living with hEDS, PoTS, gastroparesis, mast cell, and all the lovely things that come with EDS. My story is lifelong and has been physically and mentally draining. As a child I had many EDS traits that caused me problems, but I did not know at the time […]
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I did not get answers until I advocated for myself

Over 10 years of “rest”… Over 10 years of “take it easy”… Over 10 years of “do some yoga and meditate”… Over 10 years of “maybe you should talk to someone”… Over 20 years of doctors shrugging me off with comments like “you’re too young and healthy to have issues”…”it’s just tendonitis”….”you’re a dancer, it’s […]
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My journey with EDS and Chiari

“You just have to learn to live with the headaches.” The doctor looked at me with a complete lack of interest, clearly not caring about what that sentence might mean for a 20-something trying to adjust to adulthood as a firefighter/paramedic. I had spent months trying to ignore the pain, overcome the balance problems, and […]
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My pain management journey

Hi! My name is Jada and I am a recent graduate of St. Mary’s College of Maryland currently living in Suitland, MD. I am 22 years old, and when I was 13 years old, I was diagnosed with EDS by Dr. Francomano after a grueling year of ER visits and hospital stays. More recently, I […]
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I wish someone had connected the dots sooner

My first symptoms of hypermobility spectrum disorder (HSD) were simple and seemingly harmless. I was super bendy. I could do all sorts of contortions and party tricks. As I got older however, each year came with more problems. By age 10 I was having chronic nausea, and by age 11, my first symptoms of Postural […]
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How clEDS has changed me since diagnosis

Before I was diagnosed with EDS at the age of 37, I would have described myself as outgoing, friendly, brave, trusting and strong – but it wasn’t until now, 3-5 years after being officially diagnosed, that I consider I truly know what these words mean. I wanted to be resilient and courageous, pushing healthy boundaries […]
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While there is life, there is hope! 

My story is like most with EDS. As a young child, I heard “it’s just growing pains” multiple times. As a teenager, my immune system dipped and infection wreaked havoc on my body. It wasn’t until a virus came a few years later that left permanent damage. I was diagnosed with hypermobile EDS (hEDS) in […]
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