‘Living with EDS and HSD’ Webinar Series

WEBINARS

Jefferson Doyle, MBBChir, PhD, MHS: “Ocular Manifestations and Eye Surgery Considerations in Patients with EDS and HSD”

Jefferson Doyle, MBBChir, PhD, MHS, specializes in pediatric ophthalmology and genetic eye disease. He joins us to discuss manifestations of ocular issues that can affect individuals with EDS or HSD, and will also discuss special considerations an individual should take into account when approaching the conversation of surgical repair of an eye.

Dr. Doyle has published on a number of genetic disorders over the past decade and has given multiple national and international talks. His main research focus is understanding the genetic causes and molecular mechanisms driving genetic eye diseases, and utilizing that knowledge to develop new treatments.

Updated slides used in this presentation are available in PDF from https://bit.ly/3hYM9HC.

Presentations are recorded and (barring technical difficulties) become available here and on our YouTube channel.

Seth Rotberg: “Connecting with Other Young Adults in Your Community”

The challenges facing young adults differ from those affecting older adults and are not always being heard or addressed. The burdens that young adults carry include coping with their disease, talking with family, friends, and romantic partners about their health condition, planning their future (family and career), and finding beneficial and responsible peer-support. Our Odyssey is a fairly new 501(c)(3) nonprofit who provides social and emotional support to young adults (ages 18-35) impacted by a rare or chronic condition. This webinar will go over how Our Odyssey provides year-round support to young adults and opportunities to attend their in-person or virtual meet-ups. Join us as we talk about some of these issues, and then open the webinar up to our young adult attendees for a Q&A and discussion.

Drs. Jane Simmonds & Siddarth Prakash: “Physical Therapy in vEDS”

Dr. Siddarth Prakash, cardiologist, and Dr. Jane Simmonds, physiotherapist, join us to delve into the vital topic of vascular Ehlers-Danlos syndrome and exercise. Some of the highlights of this webinar include a discussion on the guidelines for sports, exercise, and physical therapy, the role exercise plays in the overall cardiac health, the benefits of exercise for aortic diseases, and ways to adapt physical therapy for vascular Ehlers-Danlos syndrome.

Slides used by Dr. Prakash are available in PDF from https://bit.ly/3cV32zL.

Shani Weber, MS: “Advocacy at Home”

We talk a lot about how awareness and advocacy can happen any time of the year and not just during May EDS and HSD Awareness Month. We do not talk enough about how awareness and advocacy can happen from home in addition to in the community. Shani Weber, Advocacy and Community Director of The Ehlers-Danlos Society, will discuss ways to spread awareness and to advocate for what is important to you from your home. You can do more than just social media posts. Join us on May 8th, 2020 at 3:00pm EDT, to find different ways you can be an advocate at home, while we celebrate our EDS and HSD Awareness month in a new way this year—virtual!

Slides used in this presentation are available in PDF from https://bit.ly/2WB7pZZ.

Caring for the Caregivers

Cristol O’Loughlin: “Caring for the Caregivers: Sensory Solutions for Caregiver CTSD”

From a fairytale family to losing three brothers, maternal advocate Cristol Barrett O’Loughlin draws on personal tragedy to ease the suffering hearts of others. Her inspiring stories of courageous #RareMoms, reveal the secrets to sustainable self-care and wellness. Forget “PTSD”—more accurate is “CTSD” (Chronic Traumatic Stress)—as our rare community grapples with the realities of long-term caregiving and disease management. There is a purpose to our pain. With guided meditations and her signature infectious enthusiasm, Cristol gently nudges us all to move beyond “Why me?” into “What can I do to help others and to help myself?”

Slides used in this presentation are available in PDF from https://bit.ly/2xlV9nu.

This presentation is also available on our YouTube channel.

Shani Weber, MS: “How to Have Effective Doctor Appointments—Tips for Preparation and in the Doctor’s Office”

Shani Weber, Community and Advocacy Director with The Ehlers-Danlos Society, shares tips and lessons learned from the experiences of tens of thousands who have a type of EDS or HSD. Our hope with this webinar, is that you will find a few new ideas on how to improve your doctor visits and have better doctor appointments all around.

Slides used in this presentation are available in PDF from https://bit.ly/3f6oy6q.

This presentation is also available on our YouTube channel.

Marcia C. Perretto, PT, DPT: “Actify Physiotherapy and Wellness”

Join Dr. Marcia Perretto, Founder and CEO of Actify Physiotherapy and Wellness, as she discusses the Actify Approach to pain management and reduction in patients with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD). This webinar is for both patients and healthcare workers alike who would like to learn more about this holistic approach to reduce pain and improve joint stability.

Patients with hEDS and HSD are prone to developing long term pain and fatigue. Sound like you? A well-rounded physical therapy program designed especially for this population can help treat joint instability, pain, and fatigue by focusing on closed-kinetic chain (CKC) exercises along with other targeted trainings. The Actify System is an evidence-based treatment that incorporates CKC exercises, multi-range isometric contractions, and proprioceptive training with sling training and neuromuscular re-education. The method uses a specific and gradual exercise progression in a pain-free approach, always keeping in mind each patient’s tolerance to activities. This holistic treatment has proven to help our patients in reducing their daily pain and improving their joint stability.

This presentation is also available on our YouTube channel.

Living with EDS and HSD in Corona Times

Mark Scheper, PT, CMS, PhD: “Juggling Your Health on a Ball and a Trampoline: Living with Ehlers-Danlos in Corona Times”

These days come with challenges due to the corona virus spread: limited access to health care services, social isolation, and generally limited options for physical activity. These challenges can test your ability to find “stability” in order to maintain your activity levels as well as your physical and mental health. In addition each individual with Ehlers-Danlos is different and has their own environment which has their own advantages and disadvantages.

Dr. Mark Scheper joins us, to help you find stability in your own living environment and will give you a set of basic principles that enable you to tailor any remote training program that you want to do while having fun with it. This webinar is intended for families (children and parents) as well as individuals with EDS that live solitary.

Dr. Mark Scheper is a physical therapist and clinical movement scientist working as an associate professor at the University of Applied Sciences in Rotterdam, the Netherlands, and Macquarie University Sydney. He specializes in the mechanisms that underlie disability in chronic pediatric diseases with a special interest for hereditary diseases of connective tissue and other rare diseases.

The authors and The Ehlers-Danlos Society request that you carefully follow all instructions given. It is your responsibility to ensure that you are capable of doing the exercises. If you have any doubt about your level of ability to undertake any of the exercises or advice offered you should not do those exercises, and if possible, seek health professional advice. Please participate at your own risk. The authors and The Ehlers-Danlos Society accept no liability for personal injury related to participation in this exercise or activity.

Slides used in this presentation are available in PDF from https://bit.ly/2V2HI3I.

This presentation is also available on our YouTube channel.

Tiffany Edwards: “Yoga for Teens with EDS, HSD, and Hypermobility”

Join Senior Occupational Therapist Tiffany Edwards from Perth, Australia for a live 60-minute webinar designed for teenagers aged between 14–20 years with EDS, HSD, and hypermobility. The webinar is interactive, informative, and fun! It will include the benefits of yoga, adaptations for teens with EDS and hypermobility, a 30-minute guided yoga class, mindfulness, breathing techniques, calming strategies, and Q&A.

What you need: Yoga mat or carpet/rug, water bottle, pillow, enough space to move around and be able to lie down.

Tiffany is a qualified child’s yoga instructor with experience working with teens with chronic conditions and mental health.

The authors and The Ehlers-Danlos Society request that you carefully follow all instructions given. It is your responsibility to ensure that you are capable of doing the exercises. If you have any doubt about your level of ability to undertake any of the exercises or advice offered you should not do those exercises, and if possible, seek health professional advice. Please participate at your own risk. The authors and The Ehlers-Danlos Society accept no liability for personal injury related to participation in this exercise or activity.

This presentation is also available on our YouTube channel.

Ann Rodiger, M.AmSAT: “Improve Your Proprioception and Spatial Awareness While You Are At Home”

Explore how your body parts relate to each other and how you relate to the space around you. We will start with internal body awareness and move to include the environment. You will explore your thinking about yourself and your body and learn to improve your perceptions of who and where you are.

This presentation is also available on our YouTube channel.

western kids health webinar

Rowan Pearce of Western Kids Health: “An Introduction to the Western Kids Health Online Program ”

Physiotherapist Rowan Pearce from Western Kids Health in Perth Western Australia joins us to host a webinar that will introduce parents to the upcoming 12-week online exercise program.

The webinar covers the following topics:
– How to help your child keep active at home.
– What happens when kids with EDS & Hypermobility reduce activity levels.
– What you need for the 12-week exercise program.
– EDS & Hypermobility relevant tips for parents on how to make the 12-week exercise program as fun, engaging and beneficial as possible.
– Q&A time

The authors and The Ehlers-Danlos Society request that you carefully follow all instructions given. It is your responsibility to ensure that you are capable of doing the exercises. If you have any doubt about your level of ability to undertake any of the exercises or advice offered you should not do those exercises, and if possible, seek health professional advice. Please participate at your own risk. The authors and The Ehlers-Danlos Society accept no liability for personal injury related to participation in this exercise or activity.

This presentation was recorded and (barring technical difficulties) will become available here as well as our YouTube channel.

managing mental health during stressful times webinar

Marisa Bergfield: “Managing Mental Health During Stressful Times”

Join us as our very own Marisa Bergfield speaks on the importance of taking care of your mental health during stressful times, like we are seeing now in the wake of the worldwide spread of COVID-19.

We know that many in our community are feeling overwhelmed with the current global situation, and we want to provide a safe space for our community to talk and learn about practical ways to take care of your mental health, and ways deal with events like COVID-19.

Slides used in this presentation are available in PDF from https://bit.ly/3dUK7G6.

This presentation is also available on our YouTube channel.

Serwet Demirdas, MD, PhD: “Classical-like EDS”

Dr. Serwet Demirdas is a Clinical Geneticist at the Erasmus Center in Rotterdam and has several publications concerning clEDS and other types of EDS. Along with seeing many patients in daily practice, Dr. Demirdas is a member of the international EDS Consortium and is part of the rarer types working group. She coordinates the research for clEDS in the Netherlands, and is working closely with medical professionals in the Netherlands, the UK, and Belgium on research concerning clEDS and vascular EDS. Join us for this webinar, as Dr. Demirdas gives an overview of clEDS, and talks about current and ongoing research in the area.

Slides used in this presentation are available in PDF from https://bit.ly/3dLU4FV.

This presentation is also available on our YouTube channel.

strengthen your hypermobile core webinar

Jeannie Di Bon, MA, PMA-CPT: “Strengthen Your Hypermobile Core — A Home Exercise Approach for EDS, HSD, and Hypermobility”

Jeannie Di Bon, a Movement therapist with hEDS, will be discussing her unique online exercise program—Strengthen Your Hypermobile Core—in this webinar. This program has been written and designed by Jeannie who used her own extensive research and movement method to rehab her body and mind out of chronic pain. Jeannie gave this online course last week to the EDS community and looks forward to chatting in depth about the course and answering your questions.

Slides used in this presentation are available in PDF from https://bit.ly/2WZgqxH.

This presentation is also available on our YouTube channel.

Ask the Helpline

Shani Weber & Rebecca Gluck: “Ask the Helpline”

Join Shani and Rebecca as they offer advice and support around your questions.

This presentation is also available on our YouTube channel.

Eric L. Singman, MD, PhD: “Brain Injuries in EDS and HSD: Perspectives of a Neuro-opthamologist”

Dr. Eric Singman joins us to speak on how EDS and HSD patients can represent a challenge for teams treating brain injury. We will discuss some of the particulars about these challenges from the perspective of a neuro-ophthalmologist treating concussion patients.

Slides used in this presentation are available in PDF here.

This presentation is also available on our YouTube channel.

Kathy Villarreal: “A Discussion on Disability”

We are joined by Kathy Villarreal, a fellow zebra with hypermobile Ehlers-Danlos syndrome, presenting this webinar as a way to start a conversation about disability, and hopefully that spark of conversation will grow and expand outside of this webinar.

This is a very important subject to discuss—including, but not limited to topics such as the many variables of disability involving EDS and HSD, the stigma around disabilities (both visible and invisible), and discussing many ways we can recognize and support each other’s disabilities.

Join us as we present this topic in tandem with our Breaking Barriers campaign this month.

Jeannie Di Bon, MA, PMA-CPT

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.

Slides used in this presentation are available in PDF here.

Lauren Puryear, MS: “Genetic Considerations in Having Children”

Lauren Puryear joins us once again in our webinar series, to further explore genetics, and how they come into play with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), when planning for the future and starting a family.

Slides used in this webinar are available in PDF here.

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 hosted 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.

Slides used in this webinar are available in PDF from http://bit.ly/2lOlNzh and a transcript from http://bit.ly/2tdMWzs.

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.

Slides can be seen in PDF at http://bit.ly/2kIAJyE and a transcript from http://bit.ly/314sR9L.

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.

Webinar - EDS/HSD Awareness and Advocacy 101

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.

How to Keep Your Sanity When Your Health Is Insane, webinar by Cynthia Perry

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.

Webinar with Dr. Natalie Blagowidow

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 Webinar

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.

Ehlers-Danlos Society Webinar Series Living with EDS/HSD

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.

Announcing Project ECHO

Project ECHO – Supporting Clinicians Supporting Their Patients

With Lara Bloom, Dr. Alan J. Hakim, and Dr. Clair Francomano

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.