For millions of people, being “really flexible” was never just a party trick — it was the first sign of something far more complex. Ehlers-Danlos syndrome and hypermobility spectrum disorders affect not just joints, but the cardiovascular system, the nervous system, digestion, and more — often going undiagnosed for years. Dr. Brent Anderson is joined by Dr. Marcia Perretto, a doctor of physical therapy, founder and CEO of Actify Physiotherapy and Wellness in Boca Raton, Florida, and a nationally recognized expert in hypermobility-informed care.
Dr. Perretto — who lives with hypermobile EDS herself — breaks down the difference between hypermobility and a clinical diagnosis, explains how collagen dysfunction affects the whole body, and offers a clear framework for building toward safe, successful movement. Together, she and Dr. Brent explore why fear can amplify pain, how the nervous system gets caught in a downward spiral, and what it actually takes to interrupt that cycle and get people moving again — without making things worse.
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00:00 Intro
Hypermobility dismissed as “just being flexible” — but for millions with Ehlers-Danlos syndrome, it means chronic pain, joint instability, autonomic dysfunction, and years of searching for answers
00:22 Guest Introduction
Dr. Marcia Perretto’s background: DPT, founder and CEO of Actify Physiotherapy and Wellness, author of Unlocking the Secrets to the Hypermobility Puzzle, national and international speaker on hypermobility-informed care — and a person living with hEDS herself
01:22 Episode Overview
What EDS actually is, why collagen dysfunction affects far more than joints, why diagnosis takes years, and how to replace fear with freedom through safe, predictable movement
02:01 Conversation Begins
Dr. Brent and Marcia connect on shared experience in the hypermobile spectrum and the urgent need for better education — for both clinicians and patients
03:49 Setting the Purpose
Too many patients and practitioners are left without clear direction after an EDS or hypermobility diagnosis — this episode exists to change that
04:57 What Is Ehlers-Danlos Syndrome?
The 13 types of EDS, the umbrella framework, and why hypermobile EDS is the most common — yet the only type without a confirmed genetic marker
08:02 Collagen as a Whole-Body Problem
EDS is not just a joint condition — collagen dysfunction affects the cardiovascular, neurological, and gastrointestinal systems, and presents differently in every single patient
09:50 Genetic vs. Environmental Triggers & Epigenetics
How EDS is inherited, why some people are asymptomatic until a triggering event — illness, surgery, trauma — and how epigenetics can switch symptoms on
12:43 EDS vs. Hypermobility Spectrum Disorder
A critical distinction: being naturally flexible does not mean having EDS. What separates hypermobility spectrum disorder from hypermobile EDS — and why the difference matters
17:03 Not Because You Can, Doesn’t Mean You Should
Why hypermobile people gravitate toward dance, gymnastics, yoga, and Pilates — and how to educate them to work within a stable zone of movement before damage accumulates
21:03 The Lifecycle of Hypermobility: Childhood, Puberty, Aging
How symptoms evolve across a lifetime — from painless flexibility in youth, to increased pain in adolescence, to early-onset arthritis and gradual stabilization later in life
22:06 Collagen Research: What Testing Can and Can’t Tell Us
What fiber studies reveal about collagen arrangement in EDS, why genetic testing doesn’t apply to the hypermobile type, and the current limits of diagnostic science
29:57 The Beighton Score, Live and Interactive
Dr. Brent and Marcia walk through all 9 points of the Beighton hypermobility scoring test in real time — thumbs, pinkies, elbows, knees, and palms to the floor
38:00 Beyond the Beighton: Systemic Signs and Full Diagnostic Criteria
Skin fragility, piezogenic papules (“hernias of the heels”), family history, chronic widespread pain, and the role of rheumatologists and geneticists in the full diagnostic picture
44:38 Recap: The 2017 Criteria Is a Map, Not a Verdict
What all three diagnostic criteria cover, why the framework is already being revised, and what it still fails to capture about the lived reality of EDS
45:27 The Diagnosis Reaction: Fear, the Amygdala, and the Spiral Down
The neuroscience of receiving a frightening diagnosis — how the amygdala, hippocampus, and prefrontal cortex interact to create the fear-avoidance loop that worsens symptoms over time
51:10 Breaking the Cycle: Education as the First Intervention
What must happen clinically before any exercise begins — validating the patient’s experience, reframing the diagnosis, and introducing the idea that the brain can relearn safety
1:03:08 Stage 1: Proprioception and Home Base
The first phase of Marcia’s three-stage treatment model — isometrics in mid-range, short lever arms, neutral zone training, and teaching joints their home base under low threat. Strength comes later.
1:07:09 Stage 2: Controlled Load and Slow Eccentrics
Introducing slow concentric and eccentric movement, anti-rotation work, pseudo-closed chain progressions, and the 4-count tempo protocol for building stability without triggering flares
1:09:13 Stage 3: Functional Integration into Real Life
Moving from the clinic to the real world — loaded carries, stair climbing, gait normalization, and setting goals around what the patient actually wants their life to look like
1:11:18 Goal-Setting and the ICF Model
Why goals must be patient-centered and realistic from the start — from navigating an airport to walking through a grocery store. Marcia shares her own milestones: Publix → Target → IKEA.
1:13:48 Indications, Precautions, and Comorbidities
What every clinician must understand about co-occurring conditions before prescribing movement — POTS, mast cell activation syndrome, and how each one changes the treatment equation
1:17:30 Case Study: EDS + POTS + Gastroparesis
A detailed real-world case — a patient who couldn’t stand for 3 minutes, had avoided exercise for 2 years, and achieved 30 minutes of upright cycling and independent daily function within 6 months
1:23:30 Closing: Replacing Fear with Freedom
Neuroplasticity, predictable movement, daily small wins, and the core message — the same brain that learned to fear can relearn to trust through graded action
1:27:29 Where to Find Dr. Marcia Perretto
Instagram: @theeds.pt | Website: actifypt.com | Monthly free community education meetings — open to patients and clinicians alike
DPT, PT, COMT, Cert. DN, CLT, IFMACP, YTT-200
Dr. Marcia Cristiane Perretto, DPT, PT, COMT, Cert. DN, CLT, IFMACP, YTT-200, is a Doctor of Physical Therapy, educator, and the Founder & CEO of Actify Physiotherapy & Wellness (ActifyPT), a highly specialized practice in Boca Raton, Florida. Her clinical focus is hypermobility disorders (Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders) and the multi-system complexity that often comes with them—dysautonomia/POTS, mast cell activation (MCAS/MCAD), chronic pain, and upper cervical instability patterns that can disrupt neurologic and autonomic regulation. Known for a practical, science-driven teaching style, Dr. Perretto helps patients and clinicians move beyond “generic PT” by using individualized progression strategies: joint-protective strength training, motor control and proprioception work, symptom-guided pacing, and nervous system regulation to improve tolerance and recovery.
Dr. Perretto is frequently sought out for second-opinion consultations on complex cases in the U.S. and abroad, and she collaborates with physicians and other clinicians nationally to support differential diagnosis, clinical reasoning, and rehabilitation planning for high-complexity patients. She speaks nationally and internationally, teaching hypermobility-informed assessment and treatment approaches that bridge movement science, pain neuroscience, and autonomic regulation. She is the author of Unlocking The Secrets to the Hypermobility Puzzle. She is currently writing her next book, which focuses on upper cervical pathologies in EDS, highlighting diagnostic considerations, clinical patterns, and treatment strategies for safer and more effective recovery.
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