The Patient-Led Future of EDS | How the Norris Lab is Revolutionizing Research
Ehlers-Danlos Syndrome: The Basics
Ehlers-Danlos Syndromes (EDS) are a group of heritable connective tissue disorders that affect the collagen in your body, the protein that holds everything together. Think of collagen as your body’s scaffolding. When that scaffolding is too stretchy, too fragile, or built in the wrong shape, it can lead to a wide range of seemingly unrelated symptoms.
There are 13 subtypes of EDS, most of which have a known genetic marker. But the most common subtype, hypermobile Ehlers-Danlos syndrome (hEDS), does not yet have a confirmed genetic test. That means many patients spend years, or even decades, suffering without a diagnosis.
A Full-Body Condition: Symptoms of Hypermobile Ehlers-Danlos Syndrome
People with hEDS are often dismissed, misdiagnosed, or told their symptoms are in their head. But hEDS isn’t mysterious or rare, it’s just been misunderstood for too long. From chronic joint pain and fatigue to gastrointestinal issues and dysautonomia, this condition can affect every system in the body. It's time we start recognizing the signs earlier and listening to the people living with them.
But the truth is, hEDS can impact almost every system in the body.
Here are some of the most common, but underrecognized symptoms.
Musculoskeletal Symptoms
Frequent joint pain or dislocations
Severe fatigue
Muscle weakness
Easy bruising
Chronic back, neck, or limb pain
Neurological and Sensory Symptoms
Headaches or migraines
Tingling or numbness in hands and feet
Sensory overload or heightened sensitivity to light, sound, or touch
Dizziness, fainting, or near-fainting
Gastrointestinal Issues
Bloating
Constipation or diarrhea
Difficulty swallowing
Nausea or vomiting
Diagnoses like IBS or gastroparesis (which may not capture the full picture)
Autonomic Nervous System Dysfunction (Often Co-Occurring POTS)
Rapid heartbeat when standing (orthostatic intolerance)
Low blood pressure
Temperature dysregulation (cold hands and feet, or sweating easily)
Brain fog or mental fatigue
Skin and Wound Healing
Soft, stretchy, or velvety skin
Poor wound healing
Keloid or atrophic scars
Stretch marks that appear without weight changes or pregnancy
Other Clues Often Missed
History of being labeled “clumsy” or “dramatic”
Frequent injuries despite low-impact activity
Late diagnosis of ADHD, autism, or anxiety
Family members with similar unexplained symptoms
“You might hear, ‘It’s just growing pains,’ or ‘You’re just anxious.’ But for many people, that’s the first sign their connective tissue isn’t doing its job,” says Lauren Prince of Connective Wellness.
Why hEDS Goes Undiagnosed for So Long
One of the greatest challenges in diagnosing hEDS is that it doesn't show up on most tests. MRIs, X-rays, blood panels, and even some genetic screens may all come back normal. This leads to patients being told nothing is wrong, even as they live with debilitating symptoms.
Add to that a lack of physician training on EDS (especially hEDS), and you get a perfect storm of medical gaslighting, misdiagnosis, and isolation.
This is the gap that Connective Wellness and the Norris Lab at MUSC are both working to close.
The 2017 hEDS Criteria: Time for an Upgrade
The current diagnostic criteria for hEDS were established in 2017. While they were a step forward at the time, they now fall short, especially for patients who don’t “fit the mold.”
What the 2017 Criteria Focus On
Joint hypermobility (Beighton Score)
Family history
Skin and tissue features
Absence of another diagnosis
But these don’t reflect the real-world symptoms most patients experience every day. That means countless individuals are left undiagnosed simply because they aren’t bendy enough, or because their family members haven’t been formally diagnosed either.
“You can have debilitating EDS and not meet the criteria,” says Lauren Prince. “That’s why we created the Prince–Cole Scale™, to reflect what hEDS actually looks like in the body.”
The Prince–Cole Scale™, used at Connective Wellness, goes far beyond the Beighton score. It accounts for the full systemic impact of connective tissue dysfunction, allowing patients to receive the diagnosis and care they need.
How the Norris Lab Is Changing the Research Landscape
When Molly Griggs approached Dr. Chip Norris of the Norris Lab at the Medical University of South Carolina (MUSC), she wasn’t a scientist, she was a mother on a mission.
Her two daughters were experiencing severe health issues with no diagnosis. Molly believed they had EDS. Rather than being dismissed, she was welcomed.
“That first conversation changed everything,” says Molly. “Chip listened, and we started the work that’s now transforming EDS research.”
Under their joint leadership, the Norris Lab has launched one of the most patient-integrated research models in the country. They are working diligently to identify biological markers of hEDS, clarify how it overlaps with MCAS and POTS, and eventually develop a genetic test for hypermobile EDS.
Why the Norris Lab Stands Out
Patient-Led Science
Over 70% of the Norris Lab team are patients or caregiversCollaboration with Experts
They partner with clinicians, researchers, and advocacy groups across the U.S.Open Access
The lab’s work is community-centered, transparent, and deeply inclusiveNo Science Degree Needed
The Patient Visiting Scholar Program welcomes people with lived experience, not just academic credentials
“Disabled researchers don’t make your science softer. They make it sharper,” Molly Griggs explains. “They catch what others miss, because they live it.”
How Connective Wellness & the Norris Lab Are Creating a New Standard of Care
At Connective Wellness, we believe diagnostics should be functional, not performative. That means ditching the old gatekeeping criteria and looking at your body as a whole.
When you come to us, you meet with a team that actually listens. Our Prince–Cole Scale™ combined with in-depth patient interviews and collaborative testing helps us build a full picture of what’s happening in your body.
Like the Norris Lab, we believe lived experience is data.
And more than anything else, we believe that you already know something is wrong, you just need someone to believe you.
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