OT for Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD)
Introduction
If you’re seeking occupational therapy for Hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorders (HSD), we want you to be as informed as possible so we can truly partner to create the best course of treatment for YOU.
In occupational therapy, we tend to work from “menus” of evidence-based assessments and treatments. This gives us the flexibility to meet the specific needs of each patient. Below, you’ll see the assessment and treatment options your therapist may use, along with the evidence that supports them.
Please note that this page is for educational purposes and should not substitute advice from your medical provider. At the bottom of this page, you’ll find therapists near you who can support you.
Why OT for Hypermobile Ehlers-Danlos Syndrome (hEDS)?
Nonpharmacological interventions are the frontline approach for treating Ehlers-Danlos Syndrome. Occupational therapy is cost-effective and safe. Through rehabilitation, patients often experience improvements in their symptoms, which further enhance their level of function and overall quality of life.
Your multidisciplinary team may include a physician (or several specialists), an occupational therapist, a physical therapist, a nurse, a dietitian, and a psychologist.
Occupational therapists specialize in providing holistic, personalized treatments that promote overall independence. We employ strategies to optimize function that consider physical, mental, emotional, and spiritual well-being. We’re often called everyday problem-solvers, ready to process the challenges you may not have time for in your other appointments, and we may make you wonder, “Why didn’t I think of that?”
Related Assessments
Assessments are powerful tools to help us partner in your care. They establish a clear baseline, direct our treatment efforts, and give us a reliable way to track your progress over time. Your team may select some specific measures that fit your unique situation. Here are some examples:
Overall Health Assessments
Overall Health Assessments1-2 , Symptom Specific Assessment for EDS3-6
Possible Goal Areas
After a thorough evaluation and goal-setting process, it is time to start making progress. The following are treatment interventions that can be implemented as part of a comprehensive therapy program.
Possible goal areas for clinicians
Pt will increase consistency in self-care routine (toothbrushing, self-feeding, dressing) requiring no more than mod I using adaptive equipment as needed on 5 out of 7 days with good joint alignment and positioning to prevent minimize pain and injury.
Pt. will learn proper joint positioning (with adaptive equipment as needed) for engagement in (ADLs and strengthening activities) with 85% accuracy to improve strength and joint integrity needed for functional activities.
Pt. will participate in a variety closed-chain strengthening activities with at least 80% accuracy for improved body awareness, proprioception, and UE endurance needed for (educational, self-care, and play tasks).
Pt. will report need for a rest break as appropriate with 85% accuracy with independence (including to a non-parental adult) in order to improve self-management of condition.
Pt. will learn 4 new pain-management strategies and implement with min cues for self-management of condition and psychosocial wellbeing.
Pt will demonstrate good understanding of [dx] management and show increased activation as evidenced by verbalizing 3 or more techniques for reducing risk of exacerbation and/or hospitalization.
Patient will collaborate with therapist to identify and implement at least 3/4 strategies to improve sleep hygiene for (***) within 8 sessions.
Patient will demonstrate and articulate understanding of home program with independence across 3 sessions to address functional deficits, promote recovery of function, and carryover of skills for self-management of condition within 3 months.
Caregivers will recognize signs of fatigue and/or pain and understand strategies to implement for pain prevention and management of symptoms.
Treatment Interventions
Strengthening (stability, low and slow) 2,7
Joint protection 8
Positioning
ADL modification
Splinting/ orthotic management 9
Fatigue and energy management 3,10
Pacing
Energy conservation
Work simplification
Fine motor skills and hand function 11
Handwriting
Dressing, buttoning
Pain education and management 3,10,12,13
Pain neuroscience education
Coping skills and flare kit
Thought management
Distraction
Mindfulness
Sleep education and management 3
Sleep hygiene
Routines
Proprioception and body awareness 14,15,16
Balance, postural sway 4
Postural alignment 8
Interoception 17,18,19
Sensory processing 20
Ergonomic positioning and work setup
Work and school exploration, accommodations, and support 2, 22
Leisure and play pursuits
Social participation 23
Mental health support and coping skills 10
Validation 24
Working toward acceptance
Health management
Increasing self-awareness of symptoms 24
Pregnancy and post-partum considerations 10
Self-advocacy skills 10, 25
Education 10, 26
Condition pathophysiology
exacerbating and relieving factors
management
co-occurring conditions as appropriate
How to find and evaluate information related to HSD/hEDS
Home program 25
Increasing motivation, adapting routines, seeing benefit, and partnering with family/others helps increase adherence to exercise 27
Discharge suggestions
Home exercise program
Community supports
Self-management and empowerment
Red flags
Spontaneous CSF leak or tarlov cyst
Caution
Skin integrity
Easy bruising
Dislocations and subluxations
Upper cervical instability
Orthostatic intolerance (dehydration, prolonged static standing, positional changes, extremes of temperatures)
Mast cell activation (sensitivities to odors, perfumes, extreme temperatures, vibration, exertion, and more)
Vascular Ehlers-Danlos is a very different life-limiting condition
Education Resources for Clients
Hypermobility 101: Leslie Russek, PT
EDS Awareness (Webinars and Handouts)
Choosing a Therapist
Below, you can find occupational therapy professionals who have tagged “Ehlers-Danlos” as a focus area.
Although many occupational therapists do not specialize in EDS, their training is sufficient to engage a wide variety of patients in individualized interventions that help improve function, regardless of diagnosis.
You can further maximize your success and the therapist’s approach by sharing this page with them and referencing the additional continuing education options and resources provided here.
Mara Levy
MSOT, OTR/L, CLT-LANA, SEP
Rainbow Spring Wellness
Silver Spring, Maryland
ADHD, Anxiety, Autism, Cancer, Chronic Conditions, Chronic Pain, Coaching, Ehlers-Danlos Syndrome, Insomnia & Sleep, Lifestyle Medicine, Lymphedema, Neurodiversity, Postural Orthostatic Tachycardia Syndrome (POTS), Rare Diseases, Sexuality/Intimacy, Trauma & PTSD
Andrea Gibson
MS, OTR/L
Therapy and Counseling Services
Camp Hill, Pennsylvania
ADHD, Anxiety, Autism, Cerebral Palsy, Chronic Conditions, Chronic Pain, Ehlers-Danlos Syndrome, Intellectual and Developmental Disabilities (IDD), Lifestyle Medicine, Neurodiversity, Postural Orthostatic Tachycardia Syndrome (POTS), Trauma & PTSD
Shubhangi Sharma
OTR, Registered OT (BC)
Shubhangi (Shubhi) Occupational Therapy, Coaching and Consulting
Vancouver, British Columbia
ADHD, Anxiety, Chronic Conditions, Chronic Pain, Coaching, Ehlers-Danlos Syndrome, Ergonomics, Functional Neurological Disorder (FND), Health Promotion, Insomnia & Sleep, Neurodiversity, Rheumatic Diseases, Sexuality/Intimacy, Trauma & PTSD
Haley Parker Lamattina
OTR/L
Merrimack, New Hampshire
ADHD, Anxiety, Aquatic Therapy, Assistive Technology, Autism, Cerebral Palsy, Chronic Conditions, Chronic Pain, Dementia, Ehlers-Danlos Syndrome, Ergonomics, Fitness, Intellectual and Developmental Disabilities (IDD), Lifestyle Medicine, Nature-based, Neurodiversity, Neurorehabilitation, Prevention, Spinal Cord Injury, Stroke, TBI, Trauma & PTSD
Crystal Bennett
OTR/L, CLT-ALM, CWT, NLN Expert Clinician
Syracuse Area Health
Syracuse, Nebraska
Cancer, Chronic Pain, Ehlers-Danlos Syndrome, Lymphedema, Multiple Sclerosis, Orthopedics & Musculoskeletal
Kaitlyn Rambo
OTD, OTR/L, PAMS, LSVT-BIG
Mayer Fascia Wellness
Omaha, Nebraska
Aging in Place, Cerebral Palsy, Chronic Conditions, Chronic Pain, Ehlers-Danlos Syndrome, Ergonomics, Fitness, Health Promotion, Lifestyle Medicine, Orthopedics & Musculoskeletal, Prevention
Katy Owens
OTR/L, TPS
Empowered Path Occupational Therapy
Loveland, Colorado
ADHD, Anxiety, Autism, Chronic Conditions, Chronic Pain, Coaching, Cognitive Rehabilitation, Ehlers-Danlos Syndrome, Functional Neurological Disorder (FND), Health Promotion, Home Modifications, Insomnia & Sleep, Knowledge Translation, Leadership, Multiple Sclerosis, Neurodiversity, Neurorehabilitation, Prevention, Population Health, Postural Orthostatic Tachycardia Syndrome (POTS), Rheumatic Diseases, Sexuality/Intimacy, Trauma & PTSD
Emily Rich
PhD., OTR/L
Occupational Therapist
Tucson Medical Center
Tucson, Arizona
ADHD, Cancer, Chronic Conditions, Chronic Pain, Cognitive Rehabilitation, Ehlers-Danlos Syndrome, Functional Neurological Disorder (FND), Lifestyle Medicine, Neurodiversity, Parkinson’s, Postural Orthostatic Tachycardia Syndrome (POTS)
Salmin Chacha
OTR/L
Occupational Therapist
AL NOOR TRAINING CENTRE
dubai
ADHD, Augmentative and Alternative Communication, Aquatic Therapy, Aphasia & Communication Disorders, Assistive Technology, Autism, Burns, Cerebral Palsy, Chronic Conditions, Chronic Pain, CIMT, Coaching, Cognitive Rehabilitation, Dementia, Depression & Mood Disorders, Developmental Delays, Dystonia, Ehlers-Danlos Syndrome, Ergonomics, Emergency Department, Feeding and Eating, Functional Neurological Disorder (FND), Grant Writing, Hand Therapy, Health Data, ICU/Critical Care, Insomnia & Sleep, Intellectual and Developmental Disabilities (IDD), Knowledge Translation, Lifestyle Medicine, Low Vision Rehabilitation, Maternal Health, Medication Management, Mitochondrial Disorders, Multiple Sclerosis, Nature-based, Neurodiversity, Neurorehabilitation, NICU, Pelvic Health, Postural Orthostatic Tachycardia Syndrome (POTS), Rare Diseases, Rheumatic Diseases, Seating and Mobility, Sexuality/Intimacy, Spinal Cord Injury, Stroke, Swallowing & Dysphagia, TBI, Trauma & PTSD, Vestibular & Balance Rehab
Stephanie Olszewski
MOT, OTR/L, CASDC
Diverge Community Services
Flat Rock, Michigan
ADHD, Anxiety, Autism, Chronic Pain, Ehlers-Danlos Syndrome, Home Modifications, Intellectual and Developmental Disabilities (IDD), Nature-based, Neurodiversity, Prevention, Postural Orthostatic Tachycardia Syndrome (POTS), Sexuality/Intimacy, TBI, Trauma & PTSD, Vestibular & Balance Rehab
Marlene Handler
MS, OTR/L, TIPHP, CSOT
The Lifted Lotus, PLLC
Brooklyn, New York
Anxiety, Chronic Pain, Ehlers-Danlos Syndrome, Fitness, Health Promotion, Insomnia & Sleep, Maternal Health, Pelvic Health, Sexuality/Intimacy, Trauma & PTSD
Amanda M Fonner
OTR/L
Educator
Mercy Hospital Jefferson
Festus, Missouri
Anxiety, Burns, Cancer, Chronic Conditions, Chronic Pain, Cognitive Rehabilitation, Dementia, Depression & Mood Disorders, Ehlers-Danlos Syndrome, Functional Neurological Disorder (FND), Hand Therapy, Health Promotion, Low Vision Rehabilitation, Lymphedema, Multiple Sclerosis, Neurodiversity, Neurorehabilitation, Orthopedics & Musculoskeletal, Parkinson’s, Social Determinants of Health, Stroke, TBI, Trauma & PTSD, Vestibular & Balance Rehab
Madison Lund
OTS
Student
Queen Creek, Arizona
Anxiety, Assistive Technology, Burns, Cancer, Cerebral Palsy, Chronic Conditions, Cognitive Rehabilitation, Ehlers-Danlos Syndrome, Ergonomics, Grant Writing, Health Data, Insomnia & Sleep, Intellectual and Developmental Disabilities (IDD), Leadership, Maternal Health, Multiple Sclerosis, Neurodiversity, Neurorehabilitation, NICU, Obsessive-Compulsive Disorder (OCD), Orthopedics & Musculoskeletal, Postural Orthostatic Tachycardia Syndrome (POTS), Rheumatic Diseases, Spinal Cord Injury, TBI, Trauma & PTSD
PJ Bhakta
OTR, OTD, PCES, CSOT
Consultant
TheraSolutions Consulting, LLC
Cedar Park, Texas
ADHD, Chronic Pain, Coaching, Depression & Mood Disorders, Ehlers-Danlos Syndrome, Ergonomics, Fitness, Hand Therapy, Health Data, Health Policy, Health Promotion, Industrial Rehabilitation, Insomnia & Sleep, Knowledge Translation, Lifestyle Medicine, Leadership, Maternal Health, Neurodiversity, NICU, Orthopedics & Musculoskeletal, Pelvic Health, Prevention, Population Health, Sexuality/Intimacy, Social Determinants of Health, Sports Medicine & Performance, Trauma & PTSD
Kathleen Davidson
MA, OTR/L
Occupational Therapist
Kathleen Davidson - Occupational Therapist
Los Angeles, California
ADHD, Anxiety, Aquatic Therapy, Autism, Cerebral Palsy, Coaching, Cognitive Rehabilitation, Dystonia, Ehlers-Danlos Syndrome, Ergonomics, Fitness, Hand Therapy, Home Modifications, Insomnia & Sleep, Intellectual and Developmental Disabilities (IDD), Low Vision Rehabilitation, Multi-tiered System of Supports, Nature-based, Neurodiversity, Neurorehabilitation, Obsessive-Compulsive Disorder (OCD)
Carrie Griffin
OTD, OTR/L, MBA, CPAM
MaxAbility Therapy Services
Council Bluffs, Iowa
ADHD, Autism, Cerebral Palsy, Ehlers-Danlos Syndrome, Intellectual and Developmental Disabilities (IDD), Leadership, Neurodiversity, Orthopedics & Musculoskeletal, Rare Diseases
Jason Kreuzman, MS, OTR/L
MS, OTR/L
Researcher
RewireOT
Ellisville, Missouri
Anxiety, Chronic Pain, Ehlers-Danlos Syndrome, Functional Neurological Disorder (FND), Neurodiversity, Neurorehabilitation, Postural Orthostatic Tachycardia Syndrome (POTS)
Kelli Meer
OTR/L, CAPS
Worthington, Ohio
Aging in Place, ADHD, Anxiety, Autism, Chronic Conditions, Cognitive Rehabilitation, Dementia, Ehlers-Danlos Syndrome, Ergonomics, Fitness, Health Policy, Health Promotion, Home Modifications, Insomnia & Sleep, Intellectual and Developmental Disabilities (IDD), Lifestyle Medicine, Leadership, Low Vision Rehabilitation, Lymphedema, Nature-based, Neurodiversity, Neurorehabilitation, Orthopedics & Musculoskeletal, Parkinson’s, Prevention, Population Health, Postural Orthostatic Tachycardia Syndrome (POTS), Seating and Mobility, Social Determinants of Health, Stroke, Trauma & PTSD
Rebecca Beckley
OTD, OTR/L
Good Health Physical Therapy & Wellness
Portland, Oregon
ADHD, Anxiety, Chronic Conditions, Chronic Pain, Ehlers-Danlos Syndrome, Health Promotion, Knowledge Translation, Neurodiversity, Postural Orthostatic Tachycardia Syndrome (POTS)
Marnie Renda
OTD, M.Ed. OTR/L
Xavier University
Cincinnati, Ohio
Aging in Place, ADHD, Amyotrophic Lateral Sclerosis (ALS), Assistive Technology, Chronic Conditions, Ehlers-Danlos Syndrome, Grant Writing, Health Policy, Health Promotion, Home Modifications, Knowledge Translation, Leadership, Low Vision Rehabilitation, Multiple Sclerosis, Neurodiversity, Neurorehabilitation, Parkinson’s, Pelvic Health, Prevention, Population Health, Seating and Mobility, Sexuality/Intimacy, Social Determinants of Health, Trauma & PTSD
Shaunna Kotka
OTD, OTR/L, CLT-LANA, CMT
Administrator
Open Grounds Inc.
Marina del Rey, California
ADHD, Anxiety, Cancer, Chronic Conditions, Chronic Pain, Cognitive Rehabilitation, Dementia, Depression & Mood Disorders, Dystonia, Ehlers-Danlos Syndrome, Fitness, Health Promotion, Home Modifications, Insomnia & Sleep, Knowledge Translation, Lymphedema, Medication Management, Neurodiversity, Neurorehabilitation, Obsessive-Compulsive Disorder (OCD), Orthopedics & Musculoskeletal, Parkinson’s, Prevention, Population Health, Postural Orthostatic Tachycardia Syndrome (POTS), Rare Diseases, Rheumatic Diseases, Social Determinants of Health, Sports Medicine & Performance, Stroke, TBI, Trauma & PTSD
Kendra Petersen
OTR/L
Authentic Kids Therapy
San Diego, California
ADHD, Anxiety, Autism, Cerebral Palsy, Coaching, Depression & Mood Disorders, Ehlers-Danlos Syndrome, Neurodiversity, Trauma & PTSD
Ashley Elma
OTS
Student
Xavier University
Cincinnati, Ohio
ADHD, Autism, Cancer, Ehlers-Danlos Syndrome, Hand Therapy, Home Modifications, Intellectual and Developmental Disabilities (IDD), Lifestyle Medicine, Lymphedema, Maternal Health, Neurodiversity, Neurorehabilitation, NICU, Obsessive-Compulsive Disorder (OCD), Prevention, Spinal Cord Injury, Stroke, TBI, Trauma & PTSD, Tourette syndrome
Destiney Carmichael
OTS
Student
Xavier University
Cincinnati, Ohio
Aging in Place, ADHD, Amyotrophic Lateral Sclerosis (ALS), Anxiety, Assistive Technology, Autism, Burns, Cancer, Cerebral Palsy, Chronic Conditions, Chronic Pain, CIMT, Cognitive Rehabilitation, Dementia, Dystonia, Ehlers-Danlos Syndrome, Fitness, Feeding and Eating, Functional Neurological Disorder (FND), Home Modifications, Insomnia & Sleep, Intellectual and Developmental Disabilities (IDD), Lymphedema, Maternal Health, Multiple Sclerosis, Nature-based, Neurodiversity, Neurorehabilitation, NICU, Obsessive-Compulsive Disorder (OCD), Orthopedics & Musculoskeletal, Osteogenesis Imperfecta, Parkinson’s, Pelvic Health, Prevention, Postural Orthostatic Tachycardia Syndrome (POTS), Rare Diseases, Rheumatic Diseases, Seating and Mobility, Sexuality/Intimacy, Social Determinants of Health, Spinal Cord Injury, Stroke, TBI, Trauma & PTSD, Vestibular & Balance Rehab
Conclusion
Hopefully, this article has helped you understand what therapy for EDS and HSD rehab entails and whether you are a good candidate!
This article is regularly updated to reflect the latest research. If you have any research you would like us to consider for our next update, please contact us.
OT Potential does not endorse any treatments, procedures, products, or therapists referenced herein. This information is provided as an educational service and is not intended to serve as medical advice. Anyone seeking medical advice should consult their medical provider.
Contributors
Emily Rich
PhD., OTR/L
Sarah Lyon
OTR/L
Sarah Lyon, OTR/L, is the CEO of OT Potential. Sarah earned her BA from St. Olaf College and her master’s degree in occupational therapy from New York University. Her diverse clinical background spans multiple settings, including critical access, acute trauma, and state inpatient psychiatric hospitals. In 2011, she founded OT Potential to fulfill the industry's need for reliable, high-quality occupational therapy resources and continuing education.
As a recognized content creator, Sarah has collaborated with top healthcare brands like VeryWell Health, WebPT, and MedBridge. She blends her clinical expertise with a talent for creating clear, action-oriented content that empowers practitioners to excel. Passionate about elevating the OT profession, she has been featured on numerous industry podcasts. Sarah ultimately returned to her roots, running OT Potential and raising her family in her hometown of Aurora, Nebraska.
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