08/06/2026
If you have POTS, here’s what you should know about hypermobile Ehlers Danlos syndrome.
Dysautonomia International Conference Summary #4
During her presentation on hypermobile Ehlers Danlos syndrome (hEDS), Dr. Alissa Zingman, MD, MPH, of P.R.I.S.M. Spine & Joint, shared some really interesting research on connective tissue and why hEDS involves much more than just our joints.
One of the biggest things that caught my attention was this:
Our genes determine the blueprint for our connective tissue, but connective tissue is living tissue that’s constantly being repaired and remodeled throughout our lives.
Dr. Zingman explained that the extracellular matrix (ECM), the network that surrounds and supports our cells, is always being maintained and remodeled. That process depends on connective tissue cells, called fibroblasts, communicating with the immune system.
She also talked about research using skin samples from people with hEDS. Fibroblasts grown from those samples continued to build a much more disorganized extracellular matrix, even after they were removed from the body and grown in the lab. That tells researchers there are real biological differences in how connective tissue is organized in people with hEDS.
Another part I loved was the race car analogy.
She explained it like this:
Your genes are the make and model of the car. Your immune system is the pit crew.
The blueprint stays the same, but connective tissue is constantly being repaired and remodeled throughout life. If the systems responsible for maintaining that tissue aren’t working the way they should, the connective tissue can be affected over time.
Dr. Zingman also challenged the way we diagnose hEDS.
She explained that the 2017 diagnostic criteria were meant to be a guideline, not a rulebook. The Beighton score doesn’t evaluate many joints that are commonly affected, including the neck, jaw (TMJ), shoulders, ribs, SI joints, kneecaps, and ankles!
Instead of focusing on one score, she emphasized looking at the whole person including symptoms, joint involvement beyond the Beighton score, and common conditions that often occur alongside hEDS.
She also shared that she thinks the updated diagnostic criteria, expected later this year, will likely include more joints and do a better job of recognizing those associated conditions. Of course, we’ll have to wait until they’re officially released to know exactly what changes are made.
Another topic that really caught my attention was breathing dysregulation!
She talked about research showing that many people with hEDS have altered breathing patterns. It immediately made me think of something so many of us have noticed, we get focused on something and suddenly realizing we’ve been breathing really shallowly…or almost forgetting to breathe altogether.
She also discussed research suggesting that mental tasks may interfere with the brain’s automatic control of breathing in some people with hEDS, which could play a role in fatigue and exercise intolerance.
She also reviewed just how many body systems hEDS can affect. Along with joint instability and chronic pain, she discussed common associated conditions like:
• Dysautonomia/POTS
• Gastrointestinal issues
• Migraines
• Raynaud’s phenomenon
• Mast cell disorders
• Small fiber neuropathy
• Fatigue and exercise intolerance
The more we learn about hEDS, the more it becomes clear that this isn’t just about loose joints. It’s a connective tissue disorder that can affect the body in many different ways.
I really enjoyed this session. We still have a lot to learn, but it’s exciting to see researchers digging deeper into the biology of hEDS. Every new study helps us better understand why so many of us experience symptoms that go far beyond our joints.
