05/10/2026
EDS Awareness Month: Hypermobility Is Not Rare — It Is Poorly Recognized
Jacques Courseault, MD
Reflections from more than a decade of caring for hypermobile patients.
Every May, the Ehlers-Danlos community asks the world to pay attention. After more than ten years working with hypermobile patients at the Fascia Institute, I want to use this awareness month to say something that may sound counterintuitive: hypermobile EDS is not rare. It is poorly recognized.
There is a difference, and the difference matters.
Rare implies the patients aren't out there. They are — sitting in primary care offices, orthopedic clinics, GI suites, emergency rooms, and pain centers, often for years before anyone says the words "connective tissue." The reason recognition lags is not that these patients are hiding. It is that hEDS, and the disorders that travel with it, are not taught in medical school. Most clinicians graduate without a single dedicated lecture on hypermobility, mast cell activation, or dysautonomia — three conditions that, in my practice, frequently show up together. These are also genuinely complex disorders to learn; they do not fit neatly into one organ system, and they reward longitudinal pattern recognition more than they reward a single test result.
That gap in training has consequences. Patients learn to translate themselves: explaining their joints, their flushing, their fainting, their food reactions, their headaches, their pelvic pain — usually to a series of specialists who each see one piece. Over time, the patient becomes the only person in the room holding the whole picture. That is an exhausting, lonely role to play while also trying to feel better.
We probably will not find "the gene"
A question I am asked often is whether there is a genetic test for hEDS. Right now, no — and I suspect there never will be a single one. There are certainly genes worth paying attention to: variants affecting the extracellular matrix (MTHFR among them) and genes involved in collagen crosslinking. But hEDS appears to be the downstream phenotype of many possible genetic combinations rather than one mutation. My expectation is that, over time, we will identify clusters of variants that map to different hypermobility and EDS subtypes — a more honest picture than the search for a single switch.
Awareness has to be wider than EDS
If we are going to be honest about awareness, we have to widen the lens. Naming hEDS but missing what often comes with it leaves patients half-helped. The same month we talk about EDS, we should also be talking about:
Mast cell activation syndrome (MCAS) — the flushing, unpredictable food and medication reactions, and inflammation that does not fit any one organ system.
Dysautonomia and POTS — the lightheadedness, tachycardia, brain fog, exercise intolerance, and sense that the autonomic system is mis-set.
Cervicomedullary syndrome and craniocervical instability — under-recognized neurological consequences of ligamentous laxity at the upper cervical spine.
Fascia — the connective-tissue context in which all of this lives, and a frequent source of pain that conventional imaging misses.
In more than a decade of practice, no two hypermobile patients I have cared for have looked alike. Symptom maps differ. Severity differs. What helps differs. The diagnostic label is shared; the lived experience is not.
What I would ask of colleagues
Most clinicians do not need to become experts in this. They need to be recognizers and referrers. If a patient is notably flexible — and especially if they bring a constellation of unexplained symptoms across systems — that flexibility is clinically relevant information. Take it seriously. Refer to people who know the territory. A timely referral spares a patient years.
Awareness also has to include treatment. There is a quiet myth that "nothing can be done" for hypermobility, and it is wrong. Physical therapy tailored to lax connective tissue, prolotherapy in selected cases, fascial-focused manual work, autonomic rehabilitation, mast cell stabilization, sleep and nutrition support, judicious bracing, and surgical consultation when truly indicated — none of this is fringe. It is the standard of care when applied by clinicians who understand the population. These options, like the diagnoses themselves, are simply not part of the standard medical curriculum, which is why so many patients believe their condition is untreatable.
To be clear: there is no cure at this time. Hypermobility is a body type, not a disease to be eliminated. But quality of life is genuinely modifiable — often dramatically so — when care is nuanced, coordinated, and informed.
To patients
If you have spent years being told your symptoms do not add up: they do. The pattern is real. There are clinicians who recognize it. Keep advocating. Keep asking. You are not the outlier — you are the unheard majority of a population medicine has not yet caught up with.
That is what awareness, this May, is really about.
