Ehlers-Danlos Resource Hub
If you're newly diagnosed with hypermobile Ehlers-Danlos syndrome — or you're a clinician trying to understand what your patients are actually doing — start here. Below is the reading order I'd give a friend, plus the external resources I actually use.
What this hub is
hEDS rarely shows up alone. In my experience and in the wider literature, it travels with mast cell activation syndrome (MCAS), POTS, dysautonomia, and craniocervical instability (CCI). The reading order below reflects that reality — start with the personal arc, move to the practical protocols, then to the specific procedural questions (PICL, CCI, stellate blocks) that come up once you've stabilized the basics.
None of this is medical advice. All of it is field-tested across a decade of treatment in the United States, Europe, and Japan, paired with the primary literature where it exists.
Read in this order
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Step 1 · February 10, 2025
From Disability to Strength: A Decade Inside hEDS, MCAS, and Regenerative Medicine
The personal case study underneath every other post on this site — what hEDS and MCAS did to my body, what surgeries and regenerative work undid, and the specific genetic and biochemical levers that mattered.
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Step 2 · February 15, 2025
Managing hEDS and MCAS, Step by Step
A decade of trial and error compressed into a working protocol — diagnostics, injury sequencing, mast cell control, hormones, and the specific physicians who actually understand the overlap.
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Step 3 · April 26, 2025
Lessons from Seven Years Inside hEDS, MCAS, POTS, and Dysautonomia
After seven years of trial, error, and rebuilding, these are the interventions that moved me from bedbound to functional: stellate ganglion blocks, environmental detox, slow tendon loading, osteopathic care paired with regenerative medicine, and a multi-year timeline.
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Step 4 · February 22, 2025
Anterior Pannus in PICL and CCI: What Patients and Physicians Should Actually Worry About
An evolving question in craniocervical instability: does anterior pannus rule out PICL? A real case, the conflicting reads, and what Henderson and Centeno actually say about it.
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Step 5 · April 28, 2025
Two Resets: Stellate Ganglion Blocks and the Hoffman Process
Two upstream resets — Neuro-Reset with bilateral stellate blocks and vagus hydrodissection, and the Hoffman Process — that finally made the regenerative work stick after years of cycling back into flares.
External resources I actually use
- The Ehlers-Danlos Society — the canonical patient-facing organization. Their physician directory and 2017 diagnostic criteria documents are the starting point. (Note: EDNF, the older Ehlers-Danlos National Foundation, has been folded into this organization.)
- Launch Regenerative (Dr. Rowan Paul) — if you seek out only one clinic, I'd go here. The regenerative-orthopedics practice where the vast majority of my own procedures were done — one of the very few in the country built around EDS patients, with a diagnosis-first, full-body systems approach.
- Dr. Dan Shadoan, DO and Dr. Matthew Gilmartin, DO (San Francisco) — osteopathic physicians whose gentle, skilled manual work underpins much of the joint-orientation, SI, and cranial work in the protocol.
- Patrick Fragu (Marrakech) — French-trained MD with osteopathic credentials (Paris XIII), practicing in Morocco. Quite frankly, he finally fixed my C7 issue — a rotation of my right ribcage that had pulled my neck, skull, and ribs out of alignment for years. The most effective single adjustment I've ever had: the costochondral soreness took a week to settle and felt like an elephant got off my chest. My intermittent CCI symptoms largely stopped after that, and the shoulder injuries I'd been chasing — which I came to believe were structural stellate irritation from the rib rotation — have been stable since. Important caveat: his adjustments are challenging. The first two produced extreme soreness and flare; the first one put me on bedrest for several days. I'm not sure I could have taken his work before years of other healing. He won't adjust more than once a month, and he's not the right starting point for someone in active flare who isn't already at least somewhat stabilized.
- Dr. Ramón Cugat (Instituto Cugat, Barcelona) — the orthopedic surgeon known for treating many of the world's top footballers, and a reference point for elite orthobiologic and surgical care.
- Dr. Jonathann Kuo (Extension Health, New York) and Dr. Matthew Cook (BioReset, Bay Area) — stellate ganglion blocks and nervous-system "neural reset" protocols. Among the most durable improvements I've seen in dysautonomia and in the longevity of regenerative work.
- Bodor Clinic (Dr. Marko Bodor) — orthobiologics for atlantoaxial instability and cervical spine work. Where my own neck stabilization happened. Dr. Bodor's practice is now closed. The r/Cervicalinstability subreddit is the most useful patient community I've found for tracking who else is doing this work. I've heard particularly good things about Dr. Agnes Stogicza, a board-certified pain physician in Budapest who does transoral injections for CCI — though I have no first-hand experience with her practice and have never spoken with her directly. I look forward to following her career.
- Centeno-Schultz Clinic — the PICL procedure for craniocervical instability, originated here. Their published RCT informs the data in the eds-picl-cci post above.
- Dr. Lawrence Afrin — for the MCAS half of the picture, the foundational clinical voice; author of Never Bet Against Occam. Most other MCAS clinicians have built on his framework. (See the MCAS hub for more.)
- Metropolitan Neurosurgery (Dr. Fraser Henderson) — the published source on CCI workup, surgical sequencing, and the anterior-pannus questions that often come up in EDS imaging.
- Dr. Bertagnoli (Germany) — artificial disc replacement when fusion isn't the right move. Where my three-level ADR happened.
If you only read one
Read the step-by-step guide to managing hEDS and MCAS. It's the longest, the most comprehensively cited, and the one I'd want a clinician to read before a first appointment.
Common questions about hEDS
- What is hypermobile Ehlers-Danlos syndrome (hEDS)?
hEDS is a heritable connective-tissue disorder marked by joint hypermobility, skin and tissue fragility, chronic pain, and a steady low rate of tissue injury. Unlike other EDS subtypes, there is no single confirmatory genetic test — diagnosis is clinical, using the 2017 international criteria from The Ehlers-Danlos Society.
- Why do hEDS and MCAS so often occur together?
They share a feedback loop: fragile connective tissue produces constant low-grade injury, mast cells release inflammatory mediators (histamine, tryptase, MMP9) onto that fragile substrate, and the resulting inflammation degrades tissue faster than it repairs. Treating one without the other usually means treating neither well. The step-by-step hEDS + MCAS guide walks the overlap in detail.
- What lab tests matter most for hEDS and MCAS?
The one I track most is MMP9 (matrix metalloproteinase-9), which reflects active collagen breakdown during flares. Alongside it: tryptase, 24-hour urine histamine and prostaglandin D2 for mast-cell activity, and an endocrine panel (free testosterone, SHBG, cortisol, pregnenolone) because chronic stress drives a "pregnenolone steal." See the MCAS hub for the full lab list. This is field experience, not medical advice — interpretation is patient-specific.
- Can regenerative medicine — PRP, BMAC, exosomes — help hEDS?
For joint and ligament instability, orthobiologics (PRP, PRF, PRGF, BMAC) and exosomes are used to stabilize tissue, often alongside osteopathic and physical-therapy work. Important caveat: exosomes are not FDA-approved, and most stem-cell therapies are not either — these remain investigational. The Regenerative Medicine section covers what the evidence does and doesn't support, and News & Regulation tracks the FDA's stance.
- What is craniocervical instability (CCI), and how is it related to hEDS?
CCI is excessive movement between the skull and upper cervical spine, more common in hypermobile patients because the stabilizing ligaments are lax. It can produce headaches, dysautonomia, and neurological symptoms. Work-up uses flexion-extension and rotational imaging. The PICL and CCI post covers the procedural questions, including the anterior-pannus debate.
- How do I find a doctor who actually understands EDS?
Start with the physician directory at The Ehlers-Danlos Society. For regenerative-orthopedic care specifically — one of the few practices built around EDS patients — see Launch Regenerative (Dr. Rowan Paul). EDS care is full-body systems work; look for someone who treats the cluster (hEDS + MCAS + dysautonomia), not one joint at a time.