Tag Archive: Coping
My name is Julia Brouwers, I’m turning 24 soon, and I live in a small city close to Amsterdam in The Netherlands. I am trying to create more awareness for people with disabilities. I recently wrote a small post about having a disability in the business world and unexpectedly it has been viewed over 1.38 […] View page
My name is Pashondra James, I am 45 years old and from NC. I am the mother to two beautiful angels, Myecia Abri and Aric Isaiah James who passed away at birth due to EDS related complications. I did not know until 2011 that I was fighting a genetic illness called hypermobile Ehlers-Danlos syndrome (hEDS). […] View page
TW: Contains discussion of drug and alcohol misuse My hypermobile Ehlers-Danlos syndrome (hEDS) story starts from my birth, inherited from my mother, but we didn’t know until six years ago when I was finally diagnosed. My mother expected as much, being diagnosed around a decade ago. Growing up we faced our fair share of hardships. […] View page
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 […] View page
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 […] View page
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 […] View page
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 […] View page
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. […] View page
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 […] View page
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 […] View page
