NEXT WEBINAR: Wednesday, December 18 at 11:00 am EDT (US/Canada)
Fransiska Malfait, MD, PhD and Alan Hakim, MA, FRCP: “Research & Publications Update 2019”
Dr. FransiskaMalfait, Chief Scientific Officer, and Dr. Alan Hakim, Chief Medical Officer ofThe Ehlers-Danlos Society, will be discussing the latest basic science andclinical studies to have been published over the last couple of years,highlighting particular individual studies or groups of studies that are takeour understanding of disease and treatment forward.
To sign up to participate in the webinar live, please visit Webinar Registration – Zoom. After signing up, you will receive an email with instructions on how to access the webinar. Presentations are recorded and (barring technical difficulties) become available on the previous webinars page as well as our YouTube channel.
Jeannie Di Bon, MA, PMA-CPT: “The No Pain, No Strain Strategy to Move Pain-Free with EDS and Hypermobility — A Look Inside The Zebra Club”
We know we should be exercising regularly to help tone the connective tissue and support our joints. Research has shown that regular exercise will help improve and alleviate pain, stress, and fatigue. But with conditions like hypermobility and EDS, we are often unsure of what exercise we should be doing, how often we should be exercising and what is safe for us to do. We may have had previous exercise experiences that left us feeling worse or injured. There has been little comprehensive guidance available — until now. This webinar is a unique opportunity to learn more about the new innovation by Jeannie Di Bon called The Zebra Club.
Jeannie has spent the past two years creating The Zebra Club, an online platform for those with hypermobility, EDS, and chronic pain. It is designed with thought and care and will guide users through a journey of safe rehabilitation and exercise allowing them to return to, or start, a healthy movement program in the comfort of their own home. As someone with EDS and a previous chronic pain sufferer, Jeannie has thought of every aspect of living with EDS and hypermobility and offers movement solutions to allow a return to healthy, functional movement. Discover why The Zebra Club could be the solution for you in this webinar.
Ellen Lenox Smith: “The Benefits of Service Dogs to Individuals Living With EDS and HSD”
After speaking on service dogs and EDS/HSD at our Global Learning Conference in Nashville this year, Ellen Lenox Smith will be joining us to host a webinar on how service dogs can be of use and enrich the lives of individuals living with EDS and HSD.
Jason Parry: “Dislocation and Subluxation Management in EDS and HSD”
Dislocating and subluxating joints can be amongst the most painful, frustrating and debilitating features of having hypermobility. Jason Parry’s webinar aims to understand some of the reasons behind why such incidents can happen in some people and more importantly what someone can do to hopefully better manage the situation when such episodes occur. Practical tips will be offered, including warning signs to watch out for, and finally what someone can do to hopefully minimize these events occurring again in the future.
William B. Ericson, Jr., MD, FACS, FAAOS: “Evaluation & Treatment of Thumb, Wrist, and Arm Pain & Weakness in Hypermobile Patients”
Dr. Ericson is an orthopedic hand surgeon with extensive training in upper extremity surgery with a focus on painful conditions that do not show on standard diagnostic tests, which includes joint instability and peripheral nerve problems. He diagnosed and treated his first EDS patient in 1990, and has been actively involved with EDS community nationally for several years. He is the co-author of the “Orthopedic Management of the Ehlers-Danlos Syndromes” article published in the American Journal of Medical Genetics, 2017.
A transcript in PDF is available from http://bit.ly/2LY4hTA
Lauren Puryear, MS: “Genetic Testing and Diagnosis of EDS and HSD”
The journey to a diagnosis of EDS or HSD can be long and filled with frustration. This webinar will address how these conditions are currently diagnosed as well as some important basic information about genetic testing. It will also cover some of the possible reasons there is not (yet) a genetic test for hypermobile EDS or HSD.
The slides used can be found in PDF at http://bit.ly/2mfaHDJ
Adam Sherman, RN, BSN: “The Effects of EDS and HSD in Males: Identifying and Addressing Unique Issues, Needs, and Concerns”
This webinar will synthesize research, standard knowledge, and common sense to explore how biological, anatomical, environmental, and psychosocial differences can create unique challenges for males built with the connective tissue of EDS and HSD; it is intended for patients and their caregivers, family, friends, and healthcare teams. Not meant to be all-encompassing, the material will still attempt to consider all stages of development, sexual/gender identities within the male sex/gender and how it may be relevant to intersex individuals.
Shani Weber: “Coping with School with EDS/HSD”
Shani discusses tips for kids, teens, parents, and teachers to help students with a type of EDS or HDS.
Accommodations, obtaining a 504 Plan or I.E.P., and planning for college are discussed. A 504 Plan and an IEP are both intended to protect a student with a disability to ensure that they are learning in the least restrictive environment.
Slides for this webinar can be found in PDF at http://bit.ly/2SamEq2.
Alan Hakim, MD, FRCP: “EDS/HSD 101”
Dr. Hakim will give an introduction to Ehlers-Danlos syndromes. He will first look at the concerns that are common throughout EDS, and then differences in particular types of EDS and the genes known to cause these. Dr. Hakim will also discuss broadly the related conditions that can arise in EDS.
Lara Bloom, Shani Weber, and Jessica Adelman: “EDS/HSD Awareness and Advocacy 101”
Have you ever wished more people knew about EDS/HSD? Want to get involved but not sure where to start? Join The Ehlers-Danlos Society’s Executive Director Lara Bloom, Patient and Community Advisor Shani Weber, and Communications Manager Jessica Adelman as they share their best strategies for effectively getting the word out about EDS/HSD, from composing simple social media posts to organizing large scale advocacy efforts, and everything in between.
Slides for this webinar can be found at http://bit.ly/2SgXNB1.
Cynthia Perry: “How to Keep Your Sanity When Your Health is Insane: Managing EDS/HSD and Multiple Comorbidities”
As if having EDS/HSD isn’t enough, many of us have other comorbid conditions to manage as well. This often means juggling multiple specialists and complex coordination of care. Cynthia will share tips and tricks for bringing order to this chaos and prioritizing your healthcare needs. She will also show you ways to build and manage your care team, research your conditions, and ultimately choose the treatments that are best for you. Cynthia wants you to learn how to be in control of your healthcare.
Slides for this webinar can be found at http://bit.ly/2SlUyse.
Natalie Blagowidow, MD: “Gynecologic and Obstetric Issues in EDS/HSD”
Pain, bleeding disorders and pelvic organ prolapse are some of the gynecologic problems seen more often in EDS/HSD. Obstetric concerns include premature delivery and slow wound healing. Management of these and other gynecologic and obstetric matters will be discussed, as well as issues relevant to several of the rare subtypes of EDS.
The slides for this webinar are available in PDF at http://bit.ly/2YVETCf.
Fransiska Malfait, MD, PhD: “The rarest types of Ehlers-Danlos syndromes: how to recognize, diagnose, and manage them”
The Ehlers-Danlos syndromes comprise a clinically and genetically heterogeneous group of heritable connective tissue disorders, which are characterized by joint hypermobility, skin hyperextensibility, and tissue friability. The 2017 International EDS Classification recognizes 13 EDS subtypes, for which defects have been identified in 19 different genes that code for extracellular matrix proteins. Some of these conditions are very rare; these are usually very complex and multisystemic conditions. During this webinar, the clinical presentation and (molecular) diagnosis of these rarest EDS subtypes will be discussed and illustrated, and management tips will be discussed.
Alan Pocinki, MD: “Evaluation and management of fatigue in EDS/HSD”
Many individuals with EDS/HSD live with debilitating fatigue. Dr. Pocincki will present an overview of many of the common factors contributing to fatigue in people with EDS/HSD, and how best to assess and test. He will also provide an overall approach to treatment, and discuss specific details for the treatment of many common causes of fatigue.
Project ECHO – Supporting Clinicians Supporting Their Patients
The Ehlers-Danlos Society is hugely excited to announce the launch of EDS ECHO in the Spring this year. Join us as we introduce the goals and aims of Project ECHO, how it will work, and how you can get involved in this transformative movement to advance EDS/HSD patient care.
Project ECHO is a collaborative model of medical education and care management that empowers clinicians everywhere to deliver better care to more people, where they live. Through regular Telemedicine sessions the ECHO model™ dramatically increases access to specialty advice and learning opportunities providing clinicians with the support they need to manage their patients.
Available for free to any clinician who wishes to join sessions from anywhere in the world, EDS ECHO will launch on the East Coast USA and the UK first, expanding over time to provide multiple expert hubs internationally.
The slides used are available through http://bit.ly/2T5LDuq.
Peter Rowe, MD: “Orthostatic Intolerance in EDS/HSD”
Learn about how the circulatory system responds to upright posture in EDS, and how circulatory problems like hypotension, recurrent fainting, and rapid heart rate can influence the severity of symptoms (especially fatigue, lightheadedness, headaches, and cognitive fogginess) in EDS. This webinar will discuss how to manage these problems with diet, postural maneuvers, and medications.
The slides used are available here in PDF.
Paldeep Atwal, MD, DipFMS, MRCP: “Discovery of AEBP1-related Ehlers-Danlos syndrome, expansion of understanding of Ehlers-Danlos and related disorders”
Discover a new form of Ehlers-Danlos syndrome and discuss the implications this has for hereditary disorders of connective tissue disorders, including discussion about the AEBP1 gene, its role in connective tissue, and some interesting potential therapies being examined. Notable points of the AEBP1-related form of Ehlers-Danlos are discussed.
Shani Weber: “EDS and HSD Support Groups: Making friends who really *get it*”
EDS and HSD Support Groups are great resources for learning who is best to see for care, asking questions, and arranging rides or other help. Shani talks about what support groups are like, where you can find support groups, and how to start a support group if you do not have one near you. In a world that often does not understand us, an EDS and HSD Support Group is the perfect way to make friends who really get it.
Clair Francomano, MD: “Comprehensive Management of Ehlers-Danlos Syndromes”
Dr. Clair Francomano (Director of The Ehlers-Danlos Society Center for Clinical Care and Research at the Harvey Institute of Human Genetics, Greater Baltimore Medical Center) discusses all aspects of managing Ehlers-Danlos syndromes, including pain control and comorbidities such as dysautonomia and mast cell activation syndrome. This was a live broadcast of a presentation hosted by the Greater Baltimore Medical Center.
Please be aware this was a live-stream only; questions were not be taken from our online viewers. When captioning is finished, the webinar will be available here.
James Black III, MD, FACS: “Vascular Management in Ehlers-Danlos Syndromes”
This seminar reviews vascular issues that may arise in EDS and HSD. Special emphasis is placed on when to seek minimally invasive vascular intervention. This webinar covers all types of EDS with a focus on vascular type.
Nigel Burrows, MBBS, MD, FRCP: “Skin changes in the Ehlers-Danlos syndromes: what are they and how to manage them”
Skin changes are common across many of the EDS subtypes. Early recognition is essential for diagnosis and management. In this webinar, the different skin problems that can arise in EDS are illustrated, as well as the mechanisms behind some of these changes. It is important to be aware of the risks, for example, of poor wound healing following surgery. This and other management tips relating to the skin are discussed.
Pradeep Chopra, MD, MHCM: “Connecting the dots with EDS, POTS, MCAS, GI, Neurology, and Physiotherapy in managing pain in EDS”
The presentation discussed the causes of pain in EDS and how conditions such as POTS, MCAS, gastrointestinal and neurological systems play into it., as well as the principles behind physiotherapy, and the pros and cons of different medications. This webinar offers practical suggestions. Please note this was a two-hour webinar. The slides used can be viewed in PDF form by clicking here.
Antonio Bulbena, MD, PhD, MSc (Cantab): “The value of identifying emotional dimensions in EDS/HSD”
EDS is often associated with long-term pain and fatigue but also with complex health problems. Since these symptoms lack often objective physical signs, people with EDS are sometimes referred for psychiatric evaluation. When medical exams give negative results, doctor-patient relationship can deteriorate because many with EDS will rightly refuse to consider a psychological attribution for their symptoms. But anxiety and depressive disorders often coexist with EDS. Identifying anxiety and depression is very important because they are often hidden, and untreated they reduce our quality of life and result in poor medical treatment outcomes.
Patrick Agnew, DPM: “Podiatry and EDS”
Patrick Agnew is a board certified podiatric physician and foot and ankle surgeon practicing in Virginia Beach. He has been studying people with collagen disorders for 3 decades. He has authored numerous publications in the field and developed new approaches to foot and ankle problems associated with these disorders. In this webinar, he discusses his current approaches.
Maggie Buckley: “Welcome to the World of EDS/HSD: Tips and Tricks for the Newly Diagnosed”
Welcome to the world of EDS and HSD. While this new diagnosis may seem daunting, know that you are joining a wonderfully supportive community, and together, we can survive and thrive. In this webinar, Patient Advocate Maggie Buckley will walk you through the basics of navigating EDS and HSD. Learn about finding the right healthcare, managing self-care, how to live life, and where to go from here.
A transcript is available http://bit.ly/2Nfao7o.
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.
A transcript of the webinar is available here.
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.