Podcast Interview with Karina Strum
‘We are Visible’ Podcast Interview
January 12, ,2020
Karina Sturm
New Feature-Length Ehlers-Danlos Documentary
“We Are Visible”
Clair Francomano MD
“EDS and Hypermobility Spectrum Disorders – Overview of Diagnosis and Management”
Andrea Julian
“Starting and Maintaining a Successful Support Group”
Maria Dastur, M.B.A.
Organizing and Managing your Facebook and Social Media
Alan G. Pocinki M.D.
Sleep Disorders in EDS
Ross A. Hauser, MD
Consequences and Resolution of Joint Instabilities in H- EDS
Bonnie Nasar RDN
“Optimizing nutrition to Decrease Brain Fog, Fatigue, & Pain”
Jeannie Di Bon. MA, PMA-CPT
“How can Pilates help with my EDS Symptoms”
Petra Klinge MD
“Managing Life with Neurological Symptoms and EDS”
Cathy L. Pederson, Ph.D
“Understanding the Relationship between Chronic Illness and Suicide”
Patrick Agnew DPM
“Foot and Ankle Treatments for EDS”
Susan Tran, PhD
“Partnering with Families to Improve Functioning in Youth with EDS”
Paolo A Bolognese, MD
Chiari I Malformation, EDS, and Craniocervical Instability
Lauren Stiles, JD
“Understanding the Relationship Between Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome”
Jordan Tishler, MD
Medical Cannabis – Pain Relief for EDS
Jeannie Di Bon, MA, PMA-CPT
“Strengthen and Control Your Hypermobile Core With Pilates”
John Ferman
Online EDS Physician CME Education
Anne Maitland, MD, PhD
“Mast Cell Activation Disorder”
Joshua Milner, M.D.
“Update on Tryptase Research”
Delia Chiaramonte, MD
“Practical Stress Management: A Mind-Body Approach”
Manu Sood, MD
Katja Kovacic, MD
“Gastrointestinal Motility Disorders and Cyclic Vomiting”
Gisela Chelimsky, MD
“Hypermobile EDS and Gastrointestinal Issues”
Pradeep Chopra, MD
“Management of complex pain in children and adults with EDS”
Pradeep Chopra, MD
“EDS Pain Management – Connecting the DOTS… part 3”
Dr. Ajoy Sarkar
“Ehlers-Danlos Syndrome Hypermobility Type in the UK: Missed or Just Misunderstood?”
Sara Williams, PhD
“Biofeedback: Training your Body to Relax”
Jan Dommerholt, DPT
“Physical Therapy for EDS – Part 2”
Why does it hurt all of the time?
Markus-Frederik Bohn, PHD
“Tenascin X and Ehlers-Danlos Syndrome”
Dr. Marco Castori
“Multidisciplinary Diagnostic and Management Approach to the EDS Patient”
Dan Doherty — YouScript / Genelex Corp.
“Pharmacogenetic Testing to Assess Altered Drug Metabolism”
Diane O’Leary, PhD
“All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients
John Ferman and Deanna Hamm
“World-Wide EDS Survey Results” by EDS Awareness
(2544 respondents from 26 countries)
Karen Foulks, OTR/CHT
Jesse Garris, Silver Ring Splint Co.
“Anatomy and SilverRing™ Splints for Ehlers-Danlos Hands”
Trish Meegan, DPT, L, ATC
“Physical Therapy for EDS: Including how your posture and thorax/ribcage affects your PT program”
Dr. Clive Bridgham
“Chronic Pain Alternatives – with focus on inflammation and nutrition”
Kevin Muldowney, MSPT
“Physical Therapy Protocol for Ehlers-Danlos Syndrome” (using the new EDS Physical Therapy Book)
Frank Gargano PT, DPT, OCS, CIDN, MCTA, CWT
“Dry Needling for EDS Pain Management: Can muscle performance be improved?”
Dr. Richard Barnum
“EDS and Psychiatric Illness Misdiagnoses”
Dr. Anne Maitland
“Mast Cell Activation Syndrome” Part 1
Dr. Alan Pocinki
“Chronic Pain, Poor Sleep, Depression, and Fatigue in EDS”
Dr. Derek Neilson
“Proving the obvious: Next Steps for the Demystification
of the Ehlers-Danlos Hypermobility Type”
Dr. Peter Rowe
“Managing Orthostatic Intolerance in EDS”
Prof Joel Lamoure, RPh., DD., FASCP
“Medical Psychiatry in Pain Management”
Eric Palmer, Orthotist
“Bracing for EDS”
Dr. John Mitakides
“TMJ, Cervical Instability and EDS”
Dr. Staci Kallish
“Cardiac Manifestations in EDS”
Presenter: Kevin Muldowney, PT Click here for a link to the announcement page Video link is on this page
EDS Pain Management. (Part 1)
Dr. Pradeep Chopra
Presenter: Michael, Healy, DPT Click here for a link to the announcement page Video link is on this page
Dr. Kenneth Goldschneider
Pain Management for EDS
We help those with Ehlers-Danlos 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. We also provide Educational recordings by EDS experts. 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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Posted on March 19, 2020
Every chronic illness and issue has an awareness month, and May happens to be the month for Ehlers-Danlos Syndromes Awareness. So prepare to promote with lots of awareness activities, articles and Facebook posts with your support group members, friends or family. If you don’t have a local group contact us to get one set up with […]
Posted on March 9, 2020
We are very excited to announce the introduction of the First, Online, Free, Ehlers-Danlos Nursing Continuing Education program. Nursing is the largest healthcare profession, with over 3.6 million nurses in the US alone. Nurses spend more time with patients than many other health professionals, and they are experts in helping patients live with their health […]
Posted on February 15, 2020
Dr. Clair Francomano has recently been added as a new EDS Physician training course to the popular Physician Training program. Click here to register Overview of Diagnosis and Management of Ehlers-Danlos Syndromes Recognizing and treating a group of complex multi-systemic connective tissue disorders: Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders (HSD) This course explains the varying presentations, […]
Posted on February 4, 2020
New Feature-Length Ehlers-Danlos Fellow Zebras, medical professionals, and everyone living with an invisible condition, We want to invite you to join the screening of the film ‘We Are Visible’, a feature-length documentary about people living with Ehlers-Danlos syndrome all across the world, at Penn State University during rare disease months. Details: […]
As a person who suffers from hEDS I am beyond thankful for the fact you guys are bringing not just awareness but you have products for us too! I am emotional writing this with tears rolling down my face for we have been ignored for so long and you guys are a blessing time to shop!
- Erin
Thanks so much for having Dr. Francamano on the webinar. As always your website is hands down the most helpful to all of us who have EDS.
- Laura from California
I can’t thank you enough for the service you are providing to help educate both patients and physicians.
- Julie from Tucson
Thank you for all of your effort to increase awareness and knowledge of EDS and bless you for taking care of your late wife.
- Patricia from Sarasota, FL
You just made me feel so much less isolated thank you!!!!!! ️
- Rachel from Atlanta
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