Experiences

Please “hover” over this Experiencse tab to get a list of Experience categories.

In this section, EDSers share their experiences and what they have learned about EDS, such as: the diagnosis journey, how to manage EDS, personal experiences, how EDS affects daily living and what inspires them.

If you would like to share your experiences or what you  have learned about EDS, please contact us with your story

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    Upcoming and Previous Webinar Speakers

    • webinar-image

      Clair Francomano MD
      “EDS and Hypermobility Spectrum Disorders – Overview of Diagnosis and Management”

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    • webinar-image

      Sonny Mullen
      “A Guide to Medical Fundraising”

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    • webinar-image

      Karina Sturm
      New Feature-Length Ehlers-Danlos Documentary
      “We Are Visible”

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    • webinar-image

      Podcast Interview with Karina Strum
      ‘We are Visible’ Podcast Interview

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    • webinar-image

      Andrea Julian
      “Starting and Maintaining a Successful Support Group”

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    • webinar-image

      Maria Dastur, M.B.A.
      Organizing and Managing your Facebook and Social Media

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    • webinar-image

      Alan G. Pocinki M.D.
      Sleep Disorders in EDS

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    • webinar-image

      Ross A. Hauser, MD
      Consequences and Resolution of Joint Instabilities in H- EDS

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      Bonnie Nasar RDN
      “Optimizing nutrition to Decrease Brain Fog, Fatigue, & Pain”

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      Jeannie Di Bon. MA, PMA-CPT
      “How can Pilates help with my EDS Symptoms”

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      Petra Klinge MD
      “Managing Life with Neurological Symptoms and EDS”

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    • webinar-image

      Cathy L. Pederson, Ph.D
      “Understanding the Relationship between Chronic Illness and Suicide”

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    • webinar-image

      Patrick Agnew DPM
      “Foot and Ankle Treatments for EDS”

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      Susan Tran, PhD
      “Partnering with Families to Improve Functioning in Youth with EDS”

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      Paolo A Bolognese, MD
      Chiari I Malformation, EDS, and Craniocervical Instability

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    • webinar-image

      Lauren Stiles, JD
      “Understanding the Relationship Between Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome”

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    • webinar-image

      Jordan Tishler, MD
      Medical Cannabis – Pain Relief for EDS

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    • webinar-image

      Jeannie Di Bon, MA, PMA-CPT
      “Strengthen and Control Your Hypermobile Core With Pilates”

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    • webinar-image

      John Ferman
      Online EDS Physician CME Education

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    • webinar-image

      Anne Maitland, MD, PhD
      “Mast Cell Activation Disorder”

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    • webinar-image

      Joshua Milner, M.D.
      “Update on Tryptase Research”

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    • webinar-image

      Delia Chiaramonte, MD
      “Practical Stress Management: A Mind-Body Approach”

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    • webinar-image

      Manu Sood, MD
      Katja Kovacic, MD
      “Gastrointestinal Motility Disorders and Cyclic Vomiting”

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    • webinar-image

      Gisela Chelimsky, MD
      “Hypermobile EDS and Gastrointestinal Issues”

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    • webinar-image

      Pradeep Chopra, MD
      “Management of complex pain in children and adults with EDS”

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    • webinar-image

      Pradeep Chopra, MD
      “EDS Pain Management – Connecting the DOTS… part 3”

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    • webinar-image

      Dr. Ajoy Sarkar
      “Ehlers-Danlos Syndrome Hypermobility Type in the UK: Missed or Just Misunderstood?”

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      Sara Williams, PhD
      “Biofeedback: Training your Body to Relax”

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      Jan Dommerholt, DPT
      “Physical Therapy for EDS – Part 2”
      Why does it hurt all of the time?

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    • webinar-image

      Markus-Frederik Bohn, PHD
      “Tenascin X and Ehlers-Danlos Syndrome”

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    • webinar-image

      Dr. Marco Castori

      “Multidisciplinary Diagnostic and Management Approach to the EDS Patient”

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      Professor Claude Hamonet and Dr. Isabelle Brock

      “A French Perspective on Ehlers Danlos”

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      Dr. Delia Chiaramonte

      “An Integrative Approach to Pain Management”

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      Dan Doherty — YouScript / Genelex Corp.

      “Pharmacogenetic Testing to Assess Altered Drug Metabolism”

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      Dr. Alan Pocinki

      “Psychiatric Misdiagnoses in EDS: When is Anxiety not Anxiety?”

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      Dr. William Ericson

      “Orthopedic Issues in the EDS Hand, Wrist and Arm”

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    • webinar-image

      Dr. Norman Marcus

      “EDS & Pain”

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      Dr. Lawrence Afrin

      “Mast Cell Activation Syndrome”

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      Diane O’Leary, PhD

      “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients

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      John Ferman and Deanna Hamm

      “World-Wide EDS Survey Results” by EDS Awareness
      (2544 respondents from 26 countries)

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      Sara Williams, PhD

      “Cognitive Behavioral Therapy as a Coping Skill for EDS”

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      Dr. Anne Maitland

      “Mast Cell Activation Syndrome in EDS Patients (Part 2)”

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      Dr. Neil Schechter

      “Chronic Pain Hypermobile Children”

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      Karen Foulks, OTR/CHT
      Jesse Garris, Silver Ring Splint Co.

      “Anatomy and SilverRing™ Splints for Ehlers-Danlos Hands”

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      Dr. Holly Gilmer

      “Chiari Malformation in EDS”

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    • webinar-image

      Dr. Blair Grubb

      “Postural Orthostatic Tachycardia Syndrome (POTs)”

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    • webinar-image

      Trish Meegan, DPT, L, ATC

      “Physical Therapy for EDS: Including how your posture and thorax/ribcage affects your PT program”

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    • webinar-image

      Dr. Patrick Agnew

      “Soft Tissue Surgery in Collagen Disease (for EDS Feet & Ankles)”

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    • webinar-image

      Dr. Petra Klinge

      “Tethered Cord Syndrome in Ehlers-Danlos”

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    • webinar-image

      Kelly Clancy, OT

      “New and Emerging Manual Therapy Approaches for EDS”

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      Dr. Clive Bridgham

      “Chronic Pain Alternatives – with focus on inflammation and nutrition”

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    • webinar-image

      Kevin Muldowney, MSPT

      “Physical Therapy Protocol for Ehlers-Danlos Syndrome” (using the new EDS Physical Therapy Book)

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    • webinar-image

      Dr. Mitzi Murray

      “How, Why and When: Genetic Testing in EDS for the Non-Geneticist”

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    • webinar-image

      Ellen Lenox Smith

      “Living Life Again with Dignity Using Medical Marijuana”

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    • webinar-image

      Dr. Joan Stoler

      “Update on Complications and Rare Forms of EDS”

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    • webinar-image

      Jennifer Ortiz, MPT, WSC

      “Physical Therapy for Sexual Dysfunction in EDS”

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    • webinar-image

      John Ferman

      “Support Groups for Ehlers-Danlos Syndrome”

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    • webinar-image

      Dr. John Mitakides

      “Musculoskeletal Headaches in EDS”

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    • webinar-image

      Dr. Patrick Agnew

      “Foot & Ankle Issues with EDS”

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    • webinar-image

      Dr. Hal Dietz

      “Connective Tissue Disorder Research”

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    • webinar-image

      Dr. Theoharis Theoharides

      “Mast Cell Disorders”

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    • webinar-image

      Dr. Brad Tinkle

      “Introduction to Ehlers-Danlos Syndrome”

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    • webinar-image

      Dr. Ronald Jaekle

      “Ehlers-Danlos and Pregnancy”

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    • webinar-image

      Dr. Manu Sood

      “Gastrointestinal Disorders in EDS”

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    • webinar-image

      Dr. Forest Tennant

      “Managing Centralized Intractable Pain in Ehlers-Danlos”

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    • webinar-image

      Cynthia Allen, GCFP, STMI

      “The Feldenkrais Method”

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    • webinar-image

      Dr. Mark E. Lavallee

      “Exercise is Medicine”

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    • webinar-image

      John Ferman

      “Support Groups for Ehlers-Danlos Syndrome”

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    • webinar-image

      Dr. Howard R. Epps

      “Orthopaedic Considerations in EDS”

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    • webinar-image

      Jan Dommerholt, DPT

      “Physical Therapy for Ehlers-Danlos, Part 1”

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    • webinar-image

      Dr. Henry Burkholder

      “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”

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    • webinar-image

      Dr. Peter Byers

      “Vascular Ehlers-Danlos Syndrome / EDS type IV”

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    • webinar-image

      Subinoy Das, MD, FACS, FARS

      “Sinus Care for Ehlers-Danlos Syndrome”

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      Frank Gargano PT, DPT, OCS, CIDN, MCTA, CWT

      “Dry Needling for EDS Pain Management: Can muscle performance be improved?”

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    • webinar-image

      Diana Lebron, MD

      “Headaches and Ehlers-Danlos Syndrome”

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    • webinar-image

      Shweta Dhar, MD, MS, FACMG

      “Coordination of Care in Adults with EDS”

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    • webinar-image

      Kathleen Kane, ESQ

      “Applying for Disability”

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    • webinar-image

      Dr. Richard Barnum
      “EDS and Psychiatric Illness Misdiagnoses”

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    • webinar-image

      Dr. Anne Maitland
      “Mast Cell Activation Syndrome” Part 1

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    • webinar-image

      Dr. Alan Pocinki
      “Chronic Pain, Poor Sleep, Depression, and Fatigue in EDS”

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    • webinar-image

      Dr. Derek Neilson
      “Proving the obvious: Next Steps for the Demystification
      of the Ehlers-Danlos Hypermobility Type”

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    • webinar-image

      Dr. Peter Rowe
      “Managing Orthostatic Intolerance in EDS”

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      Prof Joel Lamoure, RPh., DD., FASCP
      “Medical Psychiatry in Pain Management”

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    • webinar-image

      Eric Palmer, Orthotist
      “Bracing for EDS”

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    • webinar-image

      Dr. John Mitakides
      “TMJ, Cervical Instability and EDS”

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    • webinar-image

      Dr. Staci Kallish
      “Cardiac Manifestations in EDS”

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    • webinar-image

      “EDS and Pain… Connecting the Dots” Part 2

      Pradeep Chopra, MD

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      Presenter: Kevin Muldowney, PT Click here for a link to the announcement page Video link is on this page

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      EDS Pain Management. (Part 1)
      Dr. Pradeep Chopra

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      Presenter: Michael, Healy, DPT Click here for a link to the announcement page  Video link is on this page

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    • webinar-image

      Dr. Kenneth Goldschneider
      Pain Management for EDS

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