A practical handbook for life after an hEDS or HSD diagnosis — from managing your nervous system to building a care team that actually listens.
EDS Connective
Now You Know —
Here's What Comes Next
Maggie Buckley, MBA, BCPA
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What Does "Heritable Connective Tissue Disorder" Actually Mean?
hEDS, HSD, Marfan, Loeys-Dietz and beyond — plus co-occurring conditions explained
Sample from Chapter 01
Heritable connective tissue disorders — HCTDs — are a family of conditions that affect the body's connective tissue. Connective tissue is everywhere: it's the scaffolding that holds your joints, skin, blood vessels, and organs in place. When it's more flexible or fragile than typical, you feel it in ways that touch nearly every system in your body.
Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) are the most common of these conditions — and also the most underdiagnosed. They share a core feature: joints that move beyond the normal range, often accompanied by pain, fatigue, and a constellation of other symptoms that can seem completely unrelated until you understand the connective tissue thread running through all of them.
Good to know
hEDS and HSD exist on a spectrum. HSD is not a lesser diagnosis — it simply means your symptoms don't meet the full criteria for hEDS. Both are real, both deserve treatment.
Now You Know… Yay → Now You Know… Ugh
The emotional reality of diagnosis — and why the silence after the appointment is so hard
Sample from Chapter 02
Getting a diagnosis should feel like a finish line. After years — sometimes decades — of appointments, dismissals, and being told it was anxiety or deconditioning or just how your body works, someone finally saw you. You finally have a name for it.
And then… you go home. No treatment plan. No specialist referral with a next-day appointment. No roadmap. Just a diagnosis and a waiting room that's already moved on to the next patient. The relief of being believed crashes almost immediately into the reality that the healthcare system doesn't have a clear protocol for what happens to you now.
This is the "Now You Know… Ugh" moment. And it is completely, exhaustingly normal.
Get all 11 chapters free →Calm Is the First Step Forward
Nervous system regulation, autonomic basics, practical tools for cultivating calm
Setting Yourself Up for Success
Medical records, one-page summaries, symptom tracking, appointment prep
Decision-Making When Things Are Hard
Second opinions, right to decline, "wait and see," knowing when to take a break
Understanding Integrative Care
Beyond the clinical — movement, nutrition, mental health, hydration, sleep
Rethinking Pacing
Why pacing is more than "take it easy" — an integrated system for hypermobile bodies
Daily Practices · Living with Joy · Socializing with Purpose · Paying It Forward
The practical, the personal, and the community
Board-Certified Patient Advocate · Health & Patient Advocate
Maggie Buckley is a board-certified patient advocate with deep expertise in heritable connective tissue disorders. As an ECHO-trained BCPA personally connected to the hEDS and HSD community, she has spent years helping patients move from diagnosis to direction — navigating a healthcare system that rarely has a clear next step ready.
This handbook is the guide she wishes had existed from day one — built in collaboration with EDS Connective and the patient advisory group at UVA.
A diagnosis doesn't come with a next step. That silence after the appointment — that's exactly what this handbook was built to fill. You finally have answers. Now let's figure out what to do with them.
Receiving a diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD) is only the beginning. For most patients, the hardest part comes next — navigating a healthcare system that has no standard protocol for what happens after you leave that appointment.
This free post-diagnosis handbook was developed by Maggie Buckley, MBA, BCPA — a board-certified patient advocate with firsthand experience in the hEDS and HSD community — in collaboration with EDS Connective and the patient advisory group at the University of Virginia. It covers the practical, emotional, and clinical ground that your diagnosis appointment didn't have time to address.
Topics include understanding heritable connective tissue disorders and co-occurring conditions such as dysautonomia, POTS, and MCAS; nervous system regulation and managing chronic "fight mode"; organizing medical records and preparing for specialist appointments; pacing strategies built specifically for hypermobile bodies; integrative care beyond the clinical setting; and building a life with joy, purpose, and community after diagnosis.
Chapters covered
Written by Maggie Buckley, MBA, BCPA · Published by EDS Connective · edsconnective.com
