FAQ  (Frequently Asked Questions) —  EDS Support Group Web masters

  1. Why do we recommend only one web master per EDS Support Group?
    1. We want to have consistency in the way the information for your support group is posted on your pages.
    2. We need some accountability for the information that is posted.
    3. You will receive detailed instructions about how to setup and manage your web pages.
    4. Please do not share your username and password with others.
    5. We will set up another username for another member at your request.
  2. Why are there pages on my site for EDSers to “Join” my support group or “Contact” me?
    1. The email address that you provided is set up for you as a “webmaster.” It is the primary method for new members to communicate with you and for you to communicate with your members, after they join your support group.
    2. You can email your members with the links for upcoming meeting announcements, webinars or new postings and they can respond with a reply to your email address.
    3. You can change your email address or password in your “Profile” page
    4. Please do not delete the code in [brackets]. This code creates the form that the user fills out to contact you.
  3. How many pages can I set up for my group?
    1. We encourage web masters to initially use the pages provided for basic information about their support group.
    2. You are free to use these pages to communicate, as long as you follow the criteria in the “Disclaimer” on our edsawareness.com site. Try to keep the content: educational, uplifting, encouraging and helpful to all EDSers.
    3. You can request additional pages for organizing articles, etc. by emailing us at info@edsawareness.com
  4. Why do I see Chronicpainpartners.com when I log in to my site?               
    1. There are plans to have a family of sites to cover other health conditions. This is the top level “family” name.    esdawareness.com is one of the children in the family.
  5. Can I put links, pictures and videos on our EDS support group web pages?
    1. Yes, you can put links, pictures, blogs and videos on your support group web pages.
    2. We suggest that you select pictures, articles, and videos that relate to your local area.
    3. You should avoid videos that last more than 30 minutes. Our experience indicates that typical users will not listen to a video that long.
    4. If you are posting a blog or article that is already on the web, you will need to create a link back to the original article to give the author credit. If you need help with that, let us know.
    5. You are encouraged to add links to your group’s Facebook and other social media sites.
  6. Who do I contact if I need help?
    1. Help is available by emailing info@edsawareness.com.

 We thank you for your efforts to improve the local EDS Awareness in your community.

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Upcoming and Previous Webinar Speakers

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    Ross A. Hauser, MD
    10 Low-cost ways to improve symptoms of peripheral joint and spinal instabilities from hEDS, including brain fatigue, pain, POTS, MCAS and more.

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    Bonnie Nasar RDN
    “How to Build an EDS Plate: Feel Better with Food”?

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    Presenter: Jeannie Di Bon   MA PMA-CPT
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    Presenter: Dr. Eli Penn
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    Pradeep Chopra, MD
    “Management of Long Covid with EDS”

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    Eloise Stager, LMT, CST-D
    “The Role of CranioSacral Therapy in
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    Anne Maitland, M.D., Ph.D
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    Clair Francomano MD
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    Sonny Mullen
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    Karina Sturm
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    Podcast Interview with Karina Strum
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    Andrea Julian
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    Maria Dastur, M.B.A.
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    Alan G. Pocinki M.D.
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    Ross A. Hauser, MD
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    Bonnie Nasar RDN
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    Jeannie Di Bon. MA, PMA-CPT
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    Petra Klinge MD
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    Cathy L. Pederson, Ph.D
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    Patrick Agnew DPM
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    Susan Tran, PhD
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    Paolo A Bolognese, MD
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    Lauren Stiles, JD
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    Jordan Tishler, MD
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    Jeannie Di Bon, MA, PMA-CPT
    “Strengthen and Control Your Hypermobile Core With Pilates”

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

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

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

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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
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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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  • 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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  • webinar-image

    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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  • webinar-image

    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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  • webinar-image

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

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  • webinar-image

    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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