Hypermobile Ehlers Danlos Syndrome (hEDS)
“I believe that Ehlers Danlos Syndrome and hypermobility disorders are some of the most misdiagnosed and misunderstood conditions of our time..it’s time to change that narrative”
- Professor Laura Bloom President and CEO of Ehlers Danlos Society
"No other condition in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome".
-Dr Rodney Grahame
Hypermobile Ehlers-Danlos Syndrome (hEDS): Living in an Unstable Body
"It’s not just that I’m flexible. It’s that my body requires manual operation in an automatic world."
Hypermobile Ehlers-Danlos Syndrome (hEDS) is often dismissed as "being double-jointed." In reality, it is a systemic connective tissue disorder where the "glue" that holds the body together (collagen) is faulty. Ligaments are too loose. Joints are unstable. Organs shift. And as a result, the muscles have to work overtime, locking into permanent spasms just to keep the skeleton upright.
The Result? profound, bone-deep fatigue. If you have hEDS, you are running a marathon just to sit in a chair.
The "Trifecta": EDS, POTS, and MCAS
EDS rarely travels alone. It is the foundation of a cluster of conditions often called "The Trifecta." If you have hEDS, you are statistically much more likely to have:
POTS (Dysautonomia): Because your blood vessels are stretchy, they don't constrict properly, leading to dizziness, racing heart, and adrenaline dumps.
MCAS (Mast Cell Activation): Your immune system is as hyper-reactive as your nervous system.
The RCCX Connection: I view these comorbidities through the lens of the RCCX Theory, which identifies a genetic link between connective tissue, the stress response, and the immune system. You aren't "unlucky" to have all three. You have a specific genetic phenotype that requires a specialized approach.
The Neurodivergent Link
There is a massive overlap between hEDS being highly sensitiive and ADHD/Austism.
Proprioception: You might bump into walls or feel "clumsy" because your body doesn't send clear signals to your brain about where it is in space.
Sensory Processing: The pain of hEDS creates a constant background noise that contributes to sensory overload and burnout.
The "Anxiety" Myth: Many EDS patients are diagnosed with anxiety. Often, this isn't mental anxiety; it is physiological instability. Your brain feels unsafe because your joints are unsafe and you probably have POTS.
Navigating Medical Gaslighting
"You look fine." "It’s just growing pains." "You're too young to be in this much pain." The hallmark of the EDS experience is Medical Trauma. Because we often look healthy (and because collagen defects can actually make skin look younger/unwrinkled), our pain is minimized. I provide a space where you do not have to prove your pain. I know the reality of subluxations, gastroparesis, and the exhaustion of invisible illness.
My Approach: Stabilization & Strategy
Since there is no "cure" for the genetic mutation, our work focuses on Management and Quality of Life.
The Somatic Strategy: We work on "down-training" the nervous system. When the body feels unstable, the mind goes into Fight/Flight. I teach you how to signal safety to your brain even when your joints are flaring.
Pain Management Psychology: We use techniques (like meditation and mindfulness) to dial down the volume of pain signals without gaslighting yourself.
Practical Adaptation: We strategize on energy conservation (Spoon Theory), ergonomic setups, and how to advocate for yourself with doctors who don't understand the condition.
You are not "fragile." You are incredibly resilient. You are holding yourself together every single day. Let’s find a way to make that load lighter.