Upcoming and Previous Webinar Speakers

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    July 19, 2017
     Delia Chiaramonte, MD
    “Practical Stress Management for EDS”

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

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    Gisela Chelimsky, MD
    “Hypermobile EDS and Gastrointestinal Issues”

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

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

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

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    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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    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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    Dr. Blair Grubb

    “Postural Orthostatic Tachycardia Syndrome (POTs)”

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    Trish Meegan, DPT, L, ATC

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

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    Dr. Patrick Agnew

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

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    Dr. Petra Klinge

    “Tethered Cord Syndrome in Ehlers-Danlos”

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    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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    Kevin Muldowney, MSPT

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

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    Dr. Mitzi Murray

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

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    Ellen Lenox Smith

    “Living Life Again with Dignity Using Medical Marijuana”

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    Dr. Joan Stoler

    “Update on Complications and Rare Forms of EDS”

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    Jennifer Ortiz, MPT, WSC

    “Physical Therapy for Sexual Dysfunction in EDS”

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    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

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    Dr. John Mitakides

    “Musculoskeletal Headaches in EDS”

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    Dr. Patrick Agnew

    “Foot & Ankle Issues with EDS”

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    Dr. Hal Dietz

    “Connective Tissue Disorder Research”

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    Dr. Theoharis Theoharides

    “Mast Cell Disorders”

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    Dr. Brad Tinkle

    “Introduction to Ehlers-Danlos Syndrome”

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    Dr. Ronald Jaekle

    “Ehlers-Danlos and Pregnancy”

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    Dr. Manu Sood

    “Gastrointestinal Disorders in EDS”

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    Dr. Forest Tennant

    “Managing Centralized Intractable Pain in Ehlers-Danlos”

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    Cynthia Allen, GCFP, STMI

    “The Feldenkrais Method”

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    Dr. Mark E. Lavallee

    “Exercise is Medicine”

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    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

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    Dr. Howard R. Epps

    “Orthopaedic Considerations in EDS”

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    Jan Dommerholt, DPT

    “Physical Therapy for Ehlers-Danlos, Part 1”

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    Dr. Henry Burkholder

    “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”

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    Dr. Peter Byers

    “Vascular Ehlers-Danlos Syndrome / EDS type IV”

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    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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    Diana Lebron, MD

    “Headaches and Ehlers-Danlos Syndrome”

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    Shweta Dhar, MD, MS, FACMG

    “Coordination of Care in Adults with EDS”

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    Kathleen Kane, ESQ

    “Applying for Disability”

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    Dr. Richard Barnum
    “EDS and Psychiatric Illness Misdiagnoses”

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

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

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

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    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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    Eric Palmer, Orthotist
    “Bracing for EDS”

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

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    Dr. Staci Kallish
    “Cardiac Manifestations in EDS”

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    “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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    Presenter: Ellen Lenox Smith Click here for a link to the announcement page.  Video link is on this page

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        Presenter:  Carl Mentesana, DDS Click here for a link to the announcement page  Video link is on this page

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    Presenter: Stephanie Gandomi, MS Click here for a link to the announcement page. Video link is on this page

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    Dr. Kenneth Goldschneider
    Pain Management for EDS

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Directory of Local Support Groups

We help EDSers find or organize support groups in their local communities. Our free program provides each group with a listing on the Support Group Directory and Map, free webpages, coaching, and more… If there is no group in your area, we will help you survey interest and connect with local EDSers. Contact us at info@edsawareness.com for help or to be included in the directory.

Find a support group location by using the interactive map or the look-up menu below.

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Recent Articles

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Causes, Signs, Diagnosis, and Treatment for Ehlers-Danlos Syndromes

Posted on July 5, 2017

By Catherine Roberts You likely haven’t given too much thought to your skin, joints, and blood vessels lately—unless you’ve suffered an wound that required stitches or a joint injury that put you off your game for a few weeks. However, for patients with Ehlers-Danlos syndromes, a set of inherited disorders that strike these connective tissues, […]

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Boston Walk to Support Marfans/EDS Research

Posted on June 18, 2017

By  John Lynds, Times Staff: Just before she turned 3-years-old, Beth Villani’s daughter, Hannah was diagnosed with Ehlers-Danlos Syndrome. “Our daughter was diagnosed in January at just age 2 years and 10 months,” said Villani. “I will be honest and say that hearing that news broke my heart.  When the doctor told me we would […]

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Testimonials

  • Thank you for sharing your wife’s story on EDS….  an amazing soul to live through so much pain and have everyone undermine her due to their ignorance …  I could relate to her story…  I was diagnosed with Fibromyalgia in 2008 and just found out it is actually EDS.

    - Joanne in Ontario

  • First of all I would like to say thank you very much for your unwavering support of EDS Wisconsin. I am so thankful that the EDS community has you and I deeply appreciate the time and effort that you have put into awareness and education for EDS.

    - Tammy in Wisconsin

  • Thank you for dedicating your time to providing us all with these great video conferences on EDS & related conditions.
    Thank you for providing us with a web site that allows us to share our groups with the community.

    - J. Rene in Utah

  • I thank you very much for your efforts regarding making this information for EDS able to be seen worldwide.   I am from Austria and I have no doctor who is able to help me. EDS is not known in Austria.
     

    - Doris from Austria

  • I want to let you know that I appreciate the webinars so very much.  I have learned a lot from them and hope you continue to present them as more is learned about EDS and treatment.

    - Barbara

Upcoming Events

Conquer Chiari Walk Beavercreek, Ohio

September 23, 2017

9:00 am EDT

Walk starts at 10:30 am EJ Nutter Park  ...Read more...

2017 Juvenile Arthritis Camp Programs

US Camps Nationwide

Register now for week long camps

The Arthritis Foundation’s JA camp programs give kids with...Read more...

See all upcoming events

Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 652 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,311

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