Tag Archive: Coping

tarryn is wearing a neck brace, and standing with her hand on her hip

I am ready to stand strong as an advocate

The rush of feelings like bubbles during the first pour of champagne. My heart beating as though I am running the NYC marathon (a dream that will always remain a dream). Still very unsure which letters to use as I am perplexed on what words to even begin with. Never have I felt so vulnerable
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Angie wears a black dress and red shoes, and is surrounded by birthday decorations, glitter, and on the floor sits a zebra ball!

I had to heed my own advice and stop hiding my conditions

My life has been nothing short of exhausting. There’s nothing like a life interrupted to gain perspective.  Having grown up with a brother who suffers from quadriplegia and profound retardation as a result of Cerebral Palsy and severe intellectual impairment, I became grounded very young and was raised to never take anything for granted. However;
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Molly out riding her horse

Working together for Molly

My wife, Molly was diagnosed over twenty years ago with hypermobile EDS (hEDS). For years, we have dealt with many challenges EDS has brought. For most of those years, we have been able to live a pretty normal life, albeit with limitations and strong medications. We have owned and rode horses for most of our
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Being able to use my scooter to increase my independence and enjoying frozen yogurt with my amazing and empathetic son, Daniel.

Lost Identity

CW: Contains discussion of miscarriage and suicide I have always been a planner. I knew at a young age that I wanted to be a dietitian and fulfilled this goal through hard work and dedication. I married my first love and I was the first of my friends to marry and the first to have
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woman sitting in a wheelchair with her arm laid over the back

I feel you, I hear you, and I want you to know you’re not alone.

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
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Pashondra has her port accessed in hospital, wearing a face mask, due to complications from Ehlers-Danlos syndrome

I choose to be a local activist for awareness and change

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).
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headshot ramona palmer

The toll that my EDS takes on my body and my identity

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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Yamini's story

The hardest part is learning what my body can cope with

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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Dana's story

I’ve spent the past two years rediscovering myself

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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