Next Webinar: July 25, 2018 (12:30 pm Eastern)
Jane Simmonds, PD, MA, B AppSc (Physio), BPE: “Physical Therapy, Hypermobile Ehlers-Danlos Syndrome, and Hypermobility Spectrum Disorders”
Learn how hysical therapists working alongside the multidisciplinary team can help people across the lifespan to manage symptoms and improve health and wellbeing. Drawing on more than 25 years of clinical experience in this webinar Jane will draw on a range of cases and research to explain to you what physical therapy can offer and how you can work with your physical therapist to get the most out of the treatment. There will be an opportunity to ask questions.
Dr. Jane Simmonds is a Physical Therapist with more than 25 years of specialist experience. She works with children, adolescents, and adults, including high-level athletes to people who are very debilitated with pain, fatigue, instability and other hypermobility related problems. Jane heads up the Physical Therapy team in The London Hypermobility Unit and is the Chair of the International Physical Therapy EDS Working Group.
To attend the webinar live, you must sign up through this link: https://register.gotowebinar.com/register/28791104037279234
Anne Maitland, MD, PhD: “Mast Cell Activation Syndrome: More than ‘just allergies’”
Best known for its role in allergy and anaphylaxis, little is taught to medical professionals about the action of mast cells in the security of our borders, immune defense, and wound healing. This lack of knowledge has led to delayed diagnosis or misdiagnosis, and a much longer road to wellness. I will talk about the good, the bad and the ugly of mast cell action. With a better understanding of mast cell activation (MCA) and mast cell activation syndrome (MCAS), hopefully, you will gain fresh insights to what may be causing your symptoms and empower you to try again, with a “willing and able” medical-professional co-pilot, to secure the best working diagnosis and tailor a therapeutic plan to get better.
Qasim Aziz, MBBS, FRCP, PhD: “Gut Involvement in EDS”
Professor Aziz will describe the common gut problems associated with hEDS and discuss management. In addition, he will explore the link between GI involvement in hEDS with PoTS and mast cell activation disorder. Professor Aziz is the Gastrointestinal Working Group Chair on the International Consortium on Ehlers-Danlos and Related Disorders and a member of the Ehlers-Danlos Society’s Medical and Scientific Board.
John Mitakides, DDS, DAACP: “EDS & TMJ”
Join Dr. John Mitakides, DDS, DAACP for a discussion on the diagnosis and treatment of temporomandibular joint (TMJ) disorders in the EDS and HSD populations. He also discussed cervical cranial instability (CCI) and cervical myofacial pain syndrome (CMPS) in EDS and HSD. Dr. Mitakides is a member of the Oral and Mandibular Manifestations Working Group of the International Consortium on Ehlers-Danlos and Related Disorders.
Fraser Henderson, Sr., MD: “Differential Diagnosis of Headaches in the EDS Population”
Dr. Henderson discussed a broad differential diagnosis of headaches in the EDS population that requires consideration and directed studies. Diagnosis of headache in the patient with Ehlers-Danlos syndromes requires consideration of ligamentous instability of the craniocervical Junction and spine and ligamentous instability of the temporomandibular joint. One should also consider cerebrospinal fluid flow through the base of the skull, increased or decreased intracerebral pressure, obstruction or attenuation of arterial or venous blood flow into and out of the brain, and a number of inflammatory disorders which may affect the brain. Anomalies of the brainstem, skull base and spine should also be considered. Finally one must consider migraine, muscle spasms, and the various neuralgias, as well as ocular and dental issues, and problems such as intracranial hematoma and tumor.
Ellen Lenox Smith: “An Evaluation of the Use of Cannabis in EDS with Chronic Pain”
Many of us coping with EDS find that we are very drug sensitive and can get lost finding a medication that will successfully address our issue of pain. Unfortunately, society has taught us to believe that cannabis is only a social drug that will get us “high”. Learn through this webinar how the use of cannabis can offer calm and peace to your body and help you to improve the quality of your life, including sleep. Ellen Lenox Smith will address topics such as: How you can receive the calming benefits without the high, the different ways to administer the medication, how to select a strain, what the difference is from CBD to THC, how to find out where your state stands legally, and even how to advocate in your state to help either work on establishing law to allow the medical use or to improve your state law that exists. Ellen, who copes with both Ehlers-Danlos syndrome and sarcoidosis, lives in RI and has been a cannabis user and grower since 2007. She advocates across the country for its use. She and her husband are co-directors for cannabis advocacy for the US Pain Foundation.
Lara Bloom: “What the 2017 criteria mean for patients — how did we get here and where are we going?”
Our international executive director discusses the past, the present, and the future in the world of EDS and related disorders. She explores the hopes and fears patients have faced since the publication of the 2017 criteria and the work that is being done to continually improve awareness and acceptance of these conditions.
Jeannie Di Bon: “Movement therapy as a cornerstone of EDS wellbeing”
While every experience of being hypermobile or having EDS is unique to the individual, there are symptoms that many people can relate to and recognise: chronic pain, joint instability, lack of fine motor control, subluxations/dislocations, stiffness and yet flexibility, headaches, flat feet, impaired proprioception and body awareness. These are just a few. On top of these physical symptoms, there can also be emotional and psychological aspects including anxiety, tension, stress, fear of movement, lack of confidence, and a feeling of isolation. The Integral Movement Method is my own approach to movement therapy. It is Pilates-based and takes a holistic, 360-degree perspective to movement and wellbeing by encompassing the physical, emotional, and psychological aspects of living well and pain-free with hypermobility and EDS. This presentation aims to share how the Integral Movement Method has been beneficial to the EDS population and how it can be incorporated into your own therapy programme.
March 28, 2018
Ann Rodiger and Laura Tuthall: “Hypermobility, Awareness, and Choice: Optimizing Function With Alexander Technique”
Discover how the Alexander Technique can help you learn to build awareness of your thinking and movement habits. From that awareness, you can learn to make choices that help to improve balance, reduce pain, and help prevent further damage to joints structures. We will talk about how you relate to gravity, space, and your whole body, and we’ll give practical examples and ideas for your everyday life.
2017 EDS International Classification Webinar
“Intelligent Exercise – How You Can Take Control With EDS”
October 28, 2015 — The Ehlers-Danlos National Foundation held a live webinar, “Intelligent Exercise – How You Can Take Control With EDS”, with special guest Kathryn Lister, Associate Clinic Director with Physiotherapy Associates.
“Compression Supports for Pain Relief and Stability”
March 5, 2015 — The Ehlers-Danlos National Foundation held a live webinar, “Compression Supports for Pain Relief and Stability”, with special guest Erin Grigsby, Physical Therapist/Bauerfeind Product Specialist.
“Connecting the Dots Between EDS and POTS”
October 9, 2014 — The Ehlers-Danlos National Foundation and Dysautonomia International held a joint live webinar, “Connecting the Dots Between EDS and POTS”, with special guests Dr. Peter C. Rowe, Professor of Pediatrics at Johns Hopkins University School of Medicine and Dr. Satish R. Raj, Associate Professor at Libin Cardiovascular Institute, University of Calgary.