“Is This EDS?” My Journey to Diagnosis & A Guide to Help You Find Yours
I’ve always been fairly flexible. I was a dancer as a child. I also struggled with knee and heel problems and had to wear special ballet shoes with pads on them.
I threw out my back in eighth grade, just before what would have been my first Pom Line routine for a basketball game. I was home in bed, unable to move for over a week.
I didn’t think much of it, but now I realize: that’s not normal for a child.
What I didn’t know then—and what I wouldn’t fully understand until I was well into adulthood—was that these injuries were a clue.
A clue to the chronic joint pain I’d later experience.A clue to the fatigue, the GI issues, and the anxiety that came on full force through and after breast cancer treatment.A clue to the way that treatment was making my body seem to fall apart, little by little.
For me, the diagnosis came after breast cancer. After 15 surgeries. After finally sitting down with specialists who started asking the right questions—about why I’d had six hernias since starting breast cancer treatment, about my chronic fatigue and headaches, about the joint pain, about the “weird” symptoms I’d been told were “just the aftereffects of chemo”.
In the ER exactly one week after my 9 hour DIEP Flap surgery, told I had a hernia and my “intestines were everywhere”. Emergency abdominal surgery (again) the next day.
That’s when I heard the words: Hypermobile Ehlers-Danlos Syndrome (hEDS).
I’d never heard of it before. It explained so much, especially when I was also diagnosed with Mast Cell Activation Syndrome (MCAS) & POTS–together called the “Terrible Trifecta”. I’d never heard of that either, and it didn’t sound like a good thing. But it did explain the thirty plus symptoms I’d been having for so many months and years.
It was a relief.It was overwhelming.And it was just the beginning.
My mother, a fellow BRCA1 genetic mutation carrier and 3 time breast cancer survivor, later learned that she also has the “Terrible Trifecta.”
And last year, I took my youngest daughter to a geneticist who did the evaluation described below. She was also diagnosed with hEDS, and later, with MCAS & POTS.
Read my article & Get my Free Guide “How to Get Diagnosed with POTS & MCAS” here.
What is hEDS, and How Do You Get Diagnosed?
If you’re wondering whether you or someone you love might have hEDS, I want to offer something I wish I’d had years ago: a clear, simple guide to the diagnostic process.
This isn’t just about checking off symptoms. It’s about being seen. Being believed. And finally putting the pieces of your health puzzle together.
Watch my video “Hypermobile Ehlers Danlos Syndrome: What is it?” here
What’s in the Guide?
In this free PDF download, I walk you through:
- The Beighton Score, a test for joint hypermobility
- The 2017 Diagnostic Criteria for hEDS
- A list of 12 systemic features (like hernias, stretchy skin, dental issues, and more)
- What doctors need to rule out before diagnosing hEDS
- Additional signs (like POTS, fatigue, and migraines) that often go hand in hand with EDS
- Tips for seeking a proper evaluation for yourself or your child
Watch my video “How to Diagnose hEDS” here.
Why This Matters
Getting diagnosed with hEDS isn’t easy. Many of us are told for years that “nothing is wrong.” We’re misdiagnosed, dismissed, or treated for symptoms without ever naming the source.
But I’m here to say: you’re not making this up. Your pain is real. Your experiences matter. And there is a name for it.
This guide won’t diagnose you—but it can give you the knowledge and confidence to seek the care you deserve.
Download the Free Guide:
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If this resonates with you, share it with someone who might need it. Subscribe to my newsletter.
And please know—you are not alone on this journey. I see you. I hear you. And I’m walking this road too.
With love and hope,Dr. Christina Hibbert
