Ehlers-Danlos Syndrome (hEDS)
Support Calls & Consultations
Are you hypermobile and lost on what to do?
I am a coach and a hypermobile human (hEDS), who has spent decades in consults with various professionals and in continuing education on health & movement. Like many others trying to manage life in a wiggly body, I’ve tried every movement or nutrition protocol I can get my hands on and have met dead ends and successes alike along the way. My professional goal is to help others avoid the pitfalls of mismanaged health and assist in finding daily tools to support every body.
If you have hEDS/HSD, or suspect you’re on the hypermobility spectrum and would like to discuss movement, nutrition, or habit-based daily management strategies, I can help. I will point you in the right direction if something is out of my scope of practice, and will share what resources I have for your particular needs.
Consults and support calls are either 60 or 90minutes in length and are conducted via Zoom. These include a follow up email with a summary of our discussion and resources.
Please note, I do not provide medical advice- anything regarding medications or the like should be taken up with your primary care provider.
“When you hear the sound of hooves, think horses, not zebras.”
People with The Ehlers-Danlos syndromes are known as medical zebras after having adopted this identity world-wide to bring greater awareness to these rare connective tissue conditions.
In medicine, the term “zebra” is used in reference to a rare disease or condition: Doctors are taught this phrase in school to avoid misdiagnosing patients. Unfortunately, Hypermobile Ehlers-Danlos is challenging to diagnose at best with it’s scattered and variable symptoms.
hEDS (Hypermobile Ehlers-Danlos) is an inherited connective tissue disorder, caused by defects in collagen formation, resulting in hyperextensible skin, tissues, and joints. While being considered the least severe type of EDS, it is multi-systemic in nature and the impact is not limited strictly to joint hypermobility and musculoskeletal problems. Hypermobility Spectrum Disorders (HSD) can be just as severe as hEDS though are not currently confirmed to be inherited.
Move Daily is striving to bring greater attention to managing Hypermobility as seen in both hEDS and HSD. Chronic pain, acute injuries, anxiety, depression, digestive upset, high stress, kinesiophobia, and loss of quality of life are among the few things that can impact someone with hEDS or HSD. Treatment and management are generally focused on preventing severe complications, managing pain, and retaining or improving quality of life (yes, potential for improvement is possible!).
This site is intended solely to share strategies from professional experience in working with hypermobile populations and encouraging discussion to bring awareness to hEDS and HSD.
*NB* The Content on movewelldaily.com is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health and/or a medical condition. Never disregard professional medical advice because of something you have read on this website. Every hEDS and HSD patient is unique in their needs.
Why hEDS & HSD matters to Move Daily
Move Daily’s co-founder, Fréyja Spence, has been problem-solving her own hypermobility from an early age. Over the years she learned that she needed to experiment with a multitude of movement modalities simply to keep herself able to do the things that she loves. This personal experience influenced her to pursue her education in Human Kinetics and, further to that, a career in strength & conditioning. Having worked in both clinical & performance settings, her focus has been on rehabilitation and strength building to help others mitigate further injury, gain confidence in their bodies, and thrive.
Although an underlying collagen disorder had been suggested numerous times throughout her adult life, it wasn’t until 2017 at the age of 32 that Fréyja received a diagnosis of hEDS. This finally explained the constellation of pathologies that she’d been managing her entire life, from allergies, subluxations & inexplicably-spontaneous injuries, to insomnia and the multitude of “bonus” symptoms associated with flower-like collagen. Fréyja is now a major advocate for the hEDS & HSD communities, bringing awareness to management for the under-diagnosed disorder and leading by example on embracing our potential beyond the pathology.
I was born with a genetic code that doesn’t form great collagen- somewhat equated to building a house with flowers vs bricks. It came with bonus side effects of frequent injuries, food allergies and a body that behaves like a baby giraffe at the drop of a pin; the official term is BGS (Baby Giraffe Syndrome), for those scoring at home.
Thankfully, I was also born with Icelandic and British genes, which came with bonus side effects of stubborness and a sarcastic sense of humour. My family has always been athletic, loving, and supportive, so all-in-all I’m an incredibly fortunate and grateful human being who just so happens to have a different set of “health” parameters than those without particularly stretchy collagen.
We knew from Day 1 that I was very mobile: I grew up dancing ballet and at the age of 3, distinctly recall my legs “butterflying” open to a position where other toddlers could not. Throughout my dance career I had no issues achieving contortionist-like positions whether it meant folding in half backwards and pulling my feet over my face, subluxing shoulders, or bending digits backwards to touch hand or foot. My passive joint ranges, when measured for ballet school purposes, always got remarks on how excessive they were- something that’s technically a positive trait in ballet. None of this was painful, it was just a thing I could do and did. It was my normal. Eventually however, Injuries did start to creep in. Despite the stress fractures, patellar tracking issues, and terrible leg cramps and pain (easily but incorrectly explained by typical athletic wear-and-tear), at 13 I found I couldn’t hold any given “relaxed” position very long without discomfort… so I moved. And moved. And moved. Which was just as well because I loved movement and thrived off of it.
To make a potentially long story shorter, my love of movement came to a screeching halt in my teens and, for what seemed like an eternity, I wasn’t able to function for myself or even go outside, let-alone dance. This is the period of my life that sparked my fascination with the resilience of the human body. In my late teens I was able to regain enough strength and movement to leave the hospital environment, finish my high school dance “career”, and begin studying Human Kinetics at University (I’ll admit my choice of studies was initially quite selfish). It was here that I regained my freedom through movement, replacing dance with lifting and running. During this period I also quietly and privately attempted to problem-solve my own health and figure out the aversions I had to certain foods; there had to be an answer to the cyclical sickness and seemingly random GI upsets that kept me from being as social as I’d have liked. To further quench my curiosity about the human body, I also worked at a Health & Performance centre during my university years, which ultimately provided even more questions than before: for every piece I learned, I had more to ask – this was exciting to me. It was here that I became truly dedicated to learning more and to find avenues in which I could empower others with self-care to regain life through movement.
This inspiration has only grown as I’ve navigated the last decade continuing my education in the health & fitness industry and exploring any and every type of movement modality possible along with the science behind it. Although I’ve incurred injuries, every set-back has led to further learning (and questions), more appreciation for the human body, and a greater understanding for how all systems of the human body work together (or why they don’t, at times). None of this has been done alone and I wouldn’t be where I am today without my family, friends, and professional network. Due to my myriad of health issues and injuries, I’ve continued to actively reach out for help from health professionals around the world to attempt to understand the “Why?” and to improve my own outcomes. Everything I’ve learned has made me a better coach for both watching & understanding human movement and guiding clients in their own recovery from injury. With that said, it hasn’t been as straight-forward for my own body or health and the irony of this has not been lost on me.
In writing this I’m perhaps oversimplifying the rather painful and frustrating process of being too stubborn to let injuries and health concerns stop me (and they certainly have stopped me from time-to-time), but my overriding mindset has always been to learn, operate more intelligently in the future, and in doing so prevent additional occurrences. The number of failures in health that I’ve endured over the years are countless though learning from them then focusing on the successes is the only way to move forward.
I’ll be the first to admit that in my early 20s I didn’t listen well to the professionals who kept telling me to stop running or lifting. This wasn’t because I was being stubborn for the sake of it; trail racing made me feel free and lifting made me feel confident. I joked that my painful muscle cramps and trigger points “held me together” and was convinced that, with strength, I could tighten up my joints and stave off further injury; there was at least some logic in my rationale. In hindsight, I was right to not stop moving completely, but I was wrong with some of the methods I chose including treatment paths briefly explored. I tried to listen when warned over and over to reduce both mental and physical stress, but couldn’t seem to help myself from taking on more until I’d burn out again: I loved what I did and how I could live life despite my pain, yet didn’t understand why I couldn’t keep going at life full-tilt.
When I finally received my diagnosis of hEDS it served to explain my growing list of “can’ts” that seemed frustratingly endless despite continued efforts at smarter decision-making. The can’t list was full of things valuable to most humans. I can’t: fully recover from an injury (though I can heal), run, race, Olympic lift, jump, eat countless foods, stay awake past 8pm without repercussion, work long days, travel meaningful distances in a car, deal with cold weather, tolerate humidity, bounce back from stress/burnout, etc.
hEDS didn’t change who I am, it simply gave explanation to my symptoms and a different understanding and emphasis to respect my system’s biological capacity. Having others tell me not to do something didn’t suffice because I was still capable of doing many things that I supposedly “shouldn’t be capable of doing” based on my physiology. A diagnosis can feel like having a glass ceiling put on life as you know it, or give a wave of relief for answers, or even both. From everything I’m now learning, hEDS can be dramatically different from person-to-person, and I’m certainly one of the lucky ones to not have a life-threatening type. Side-bar; in the fall of 2017 I did suffer a very serious spinal injury from stress then riding a bus on a bumpy road when depleted. The nail in the coffin was returning to a fast-paced life with work travel and finding the proverbial straw that broke the camel’s back that led to a brainstem injury. Stress is a relevant precursor to injury, particularly so for the hypermobile individual with limited recovery resources. In that month, I sheared my spine in several placed, damaged cranial nerves, suffered several disc herniations, lost function of my left arm, and had concussion symptoms for much of the following year. I spent the first 6-8 months regaining control of the left side of my body and every day thereafter regaining daily life and movement functions. Injuries in hEDS – particularly of the spine- change the rules by which we have to live andI did not return to all the activities I’d done prior. While it took a couple of years to truly accept my new rules and “new normal”, it is better in many ways than the unsustainable patterns I’d been using before that led up to the injury described. We don’t need to “go back” after injury because that would bring us down the same path- we need to seek improvement instead and that is how we heal.
For me, an hEDS diagnosis brought mental relief and acceptance of why professionals keep telling me to slow down or stop certain activities forever (which had previously seemed like a death sentence).
- It gave me patience for the nature of what I still refer to as BGS flare ups, knowing that This Too Shall Pass and my choices influence change.
- It allowed me to develop preventative strategies and to understand the signs I’d already pin-pointed as being cyclical.
- It taught me that subluxations in the night after a very restful sleep weren’t directly “my fault”.
- It allowed me to accept the irony that I could help others find a pain-free return to life and sport with solid strategies to avoid further injury, while being unable to do the same for myself.
- It proved that we can heal even if we lack the genetic code to recover and with that, we can influence our genes.
- It kept me stubborn about certain goals but encouraged flexibility in my approaches and choices to improve my life’s outcome.
- It allowed me to communicate more clearly with loved ones vs. power through until I crashed to try to save face.
Lastly, it broke my heart to know there were things I’d no longer be able to safely get back to experiencing. It confirmed what I intuitively knew to be true ‘can’ts’. More than anything though, it made me more grateful than ever for having had a chance to experience certain things at all. I realize I’ve already lived an extremely full life, will continue to do so within my own biological “normal”, will gain strengths in ways I didn’t know possible, and have no regrets in the lessons along the way.
Hypermobile or not, we all owe it to ourselves to understand how to care for ourselves in order to experience life as fully as possible. Take nothing for granted: Life is beautiful, everything can change at the drop of a pin, and finding joy every day is worth it.
I have hEDS
If you have hEDS or HSD, the following posts are intended to share personal strategies for management, movement, and humour.
Every hEDS and HSD patient is unique in their needs and nothing contained on movewelldaily.com should substitute medical advice.
A loved one has hEDS
If you have a loved one with hEDS, the following posts are intended to share a collection of personal experiences, information resources, and support for families.
Every hEDS and HSD patient is unique in their needs and nothing contained on movewelldaily.com should substitute medical advice.