Tag Archive: POTS

young teenage girl sitting in her wheelchair smiling next to a Christmas tree on a hospital inpatient ward.⁠

I’m glad to have answers

I had my first shoulder dislocation at age 12 and my first knee dislocation; I now have about ten a day! Growing up I was naturally flexible and didn’t have to stretch like everyone else at gymnastics, dance, and cheerleading but little did I know this was not a good thing. ⁠ ⁠ From a
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Teaching is what brings me the most joy

When I was two years old, I peered through the window of the dance studio to watch my three older sisters take their classes. I was ready for my turn. Little did my mom realize how much dance would impact all of our lives. My sisters and I all continued dancing through high school and
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Devyn sits on a hospital bed with her arms folded, her right leg in a pink cast

Navigating a pregnancy with cEDS

Hi, I am Devyn and I am 21 years old. I have classical EDS (cEDS). It took me six years to get a diagnosis, from age eleven until age seventeen. I started noticing symptoms at age 11, but now looking back, I have had symptoms since I was younger.  I would constantly sprain my ankles,
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quinn j story

YouTube helped me to advocate for a diagnosis

My name is Quinn and I’m just like you. I love to be with my friends, I love to cook, create art, and be in nature. I have a fascination with decorative skulls and an obsession with collecting flavored chapstick. I have lived with chronic illnesses my whole life. I was born with a urea
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Assistance dog Bailey

Bailey’s story from puppy to lifesaver

Bailey’s story from puppy to lifesaver. For 10 years I battled with life-crippling symptoms and dealt with so many dismissive doctors that I truly had started to give up. I had to go to a doctor purely by chance due to a chest infection that couldn’t shift and I reluctantly went to a new doctor.
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Peighton Carter Speaking

My diagnosis has given me a platform to spread awareness

I always knew my feet were hypermobile since I was a teenager, but I had no idea about Ehlers-Danlos syndrome until I was 30. By then, my time in the military had worn away my lower extremities.  I had my first foot fusion at 22, but it wasn’t until I developed dysautonomia and postural orthostatic
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Taking up modeling has made me proud to be different

When I was growing up I was always getting hurt. I remember crying every night because my body was in so much pain. I had endless dislocations and subluxations, not to mention my PoTS and other issues that EDS has given me.  No amount of pain medication and ice packs could mask my excruciatingly painful
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I’ve learned so much from connecting with others in the community

At age 24, I began having severe body pain after having our second child. My family doctor was amazing! After a thorough exam, he referred me to a rheumatologist. In no time, I had a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS).  After listening to my entire history of being a dancer as a child, always
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