I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) when my youngest child was seen and diagnosed. I wasn’t sure if I should be excited to finally know why! But I was scared for us both. I bruise easily, will be 50 in several weeks, and live in constant pain of some degree. My hip and
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Adjusting expectations of myself has been the hardest part of coping with EDS. Just like many people with Ehlers-Danlos syndrome, I remember my childhood as a series of hospital, physiotherapy, and orthodontist appointments. I was forced into wearing kids’ Birkenstocks and doing foot-strengthening exercises I never really liked. It wasn’t until my mid-teens that the
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TW: Contains mention of suicide. I was 5 years old, excitedly cheering on my mom at her softball game, City Park ball fields, Fort Collins, Co. Mom hit the ball, I jumped and cheered with the others in the bleachers, slipped and fell through the bleachers, and life changed. Climbing back up, lifting my pant
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My childhood was a blur of activity. I was, in every sense of the word a tomboy, which for that time period meant a rough and tumble girl. I’m from a small town in Kansas, and my grandparents lived on acreage there. My happiest moments were spent feeding chickens, gathering eggs, caring for horses, picking
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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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According to my doctors, I have had hypermobile Ehlers-Danlos syndrome (hEDS) since I was a baby, but I was not diagnosed with it until I was 13. Before this I pretty much lived a normal childhood, hanging out with friends both in and out of school, shopping, cinema, and much more. I was, however, very
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I have lived my whole life with Ehlers-Danlos syndrome (EDS), I don’t know what “normality” is. My whole life has revolved around my disability, my friendships, my relationship, and everyday life. Growing up, I was always that odd one out because of my disability; I had to wear special shoes at school that mostly got
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CW: Contains discussion of self-harm When I was 15, my mother took me to a pediatric gastroenterologist. I had been struggling to keep down food for two years: I had been diagnosed with gastroparesis and I had started to struggle with body dysmorphia. When the Gastroenterologist came into the room, I was pulling at my
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I had spent most of my life so far being very active. I lived to help others. I cared for the elderly, children and disabled. I taught gymnastics for 20 years. Now the tables are turned. It’s me who needs the care and I struggle with this new role. It feels foreign to me, this
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My greatest barrier with Ehlers-Danlos syndrome has been finding my own voice. Symptoms started as a young child with unbearable leg pain at night. Then, in high school, I began having many gastrointestinal issues. I still wanted to participate on my school’s cross country team; one day while running alone I lost consciousness. Once I
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