Tag Archive: Chronic Fatigue

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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Rhonda's story

I’m a wife, mom, and author

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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15 years too long

The irony of living in close proximity to Boston, MA, a city known for its medical advancements, is that with all the world-renowned care I sought, it still took over 15 years to finally have some answers. My name is Victoria, and I am a 26 year-old full-time Doctor of Pharmacy candidate in an accelerated
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My HSD diagnosis made me feel more hopeful than ever

It all started in my last year of high school. I had suffered from headaches and migraines my whole life, but when I was 17 I got a headache that wouldn’t disappear. I went to doctors, physiotherapists and dentists: they treated my with acupunture and tried to pull my teeth out. The first tooth split
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Fighting for my validation for my child

My daughter’s previous rehabilitation doctor told us that the same program applies to hEDS as to fibromyalgia. “The pain is between the ears. We’re going to fool you and reset your brain. Your brain sends the wrong signals and we will treat that.” Because I did not agree with the rehabilitation doctor, I was almost
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I have clEDS, but I will not let it have me!

EDS…Ehlers-Danlos syndrome…until a casual conversation in 2016, on the sidewalk in front of my home with my back-yard neighbor, I had never heard of the acronym or the condition. I had recently suffered full ATFL and AITFL ligament tears in my right ankle, from a typical walk from the mall to my car. Being in
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SYMPATHY, ACCEPTANCE, & HOPE

Thanks to a great community of other Zebras sharing their experiences and talking to me about my worries the hopelessness has been getting much better. They can’t fix me but at least they help me look on the bright side and make me feel like I am not alone.
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