Tag Archive: Self-Advocacy
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 View page
One evening in 2007, I was on the computer at my home in Arlington, Virginia, browsing articles on CNN’s website when a headline caught my eye about a children’s band 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 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 View page
I was diagnosed with classical Ehlers-Danlos syndrome (cEDS) at birth; my mother had it and when her water broke a month and a half early, it was confirmed that I View page
My name is Isabella and I just turned 22 at the end of May, which is the awareness month for Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). I was View page
Don’t be a wallflower, find what works for you! I used to think everyone had constant aches and pains. My high school track and field team delighted me—I adored being View page
TW: Contains mention of suicide. For years, the struggle to find the words to raise awareness for my genetic condition, vascular Ehlers-Danlos syndrome (vEDS), has mimicked the years of working 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 View page
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 View page
