2022 Global Learning Conference Day 1

Watch the presentations from Day 1 of the 2022 Global Learning Conference

Nutrition and EDS – Laurie Bilyeu

Laurie has a Master of Science Degree in Food and Nutrition from Framingham State University, Framingham, MA and is a Board Certified Specialist in Geriatric Nutrition, soon to be certified Leap therapist.
She is deeply involved in the connective tissue disease community because her family lives and struggles with it. It is hard to find a medical practitioner who focuses on the issues that come with Ehlers-Danlos syndrome, and therefore Laurie now offers (remote) nutrition counseling with that focus.

Tools & Strategies for Pregnancy, Childbirth, and Post-Partum in EDS – Jacqui Main

Jacqui has been an Exercise Physiologist for the past 17 years. She completed a Bachelor of Applied Science Human Movement and Graduate Diploma of Exercise Rehabilitation in Ballarat. Jacqui has worked in the hospital setting, occupational rehabilitation, corporate health and university lecturing. Jacqui currently works at Active Health Clinic in Melbourne Australia in the area of her main passion of EDS/HSD, Autonomic Dysregulation Syndromes, ME/CFS and Chronic Pain Syndromes. Jacqui has learnt to manage her own CFS, POTS and HSD after living much of her life navigating various symptoms and finding the team to understand and support her invisible illness journey. Jacqui is a huge advocate for her patients knowing the difficulty of the journey taken by many. Jacqui treats patients nationally and internationally with a passion in helping people like her that have often been dismissed, misunderstood, and unsupported in their invisible illness journey.

High-Risk Pregnancy and Delivery Methods for Women with Ehlers-Danlos Syndromes – Dr. Melissa Russo

Melissa L. Russo is a specialist in maternal-fetal medicine (high-risk obstetrics) and clinical genetics. She currently works at Women and Infants Hospital, an affiliate of Warren Alpert Medical School at Brown University in Providence, Rhode Island. She pursued her residency in obstetrics and gynecology and fellowship training in maternal fetal medicine and clinical genetics at Johns Hopkins University School of Medicine in Baltimore, Maryland. Her current research, funded by the Marfan Foundation Clinical Grant, is centered on pregnant women with connective tissue disorders and aortic disease including Marfan, Loeys-Dietz and vascular Ehlers-Danlos syndromes. She sees women with connective tissue disorders in her practice with goals of: 1) empower women with these conditions with knowledge to allow them to make decisions and advocate about their reproductive choices and care during pregnancy and 2) educate health care providers on recognition and management of these conditions.

Pregnancy and Early Motherhood in hEDS and HSD – Dr. Sally Pezaro

Dr. Sally Pezaro is a registered Midwife, an adjunct Associate Professor at the University of Notre Dame in Australia, an Assistant Professor at Coventry University, a Fellow of the Royal College of Midwives (FRCM), and an editorial board member of Evidence Based Midwifery, MIDIRS and the International Journal of Childbirth. She is also a panelist on the Nursing and Midwifery Council’s fitness to practice Investigating Committee, a Senior Fellow of the Higher Education Academy (SFHEA), an Invited member of the The Ehlers-Danlos Society’s International Consortium, Midwifery Champion for the Nursing Now challenge and the lead midwife for www.hEDSTogether.com. Sally has clinical midwifery experience working in the United Kingdom, the Gambia and Ethiopia. Reflecting on her own experiences, Dr. Pezaro ensures that her work, now in research and academia remains challenge-led.

Pregnancy & Childbirth Q&A Session

Assessment and Management of the Child – Dr. Jane Simmonds

This video presentation is available to view on our Whova event app for a limited time will not be shared further.

With more than 30 years of clinical experience and 20 years as an educator and researcher, Jane combines her academic role as Associate Professor in physiotherapy education at UCL Great Ormond Street Institute of Child Health with clinical work in the London Hypermobility Unit where she specializes in hypermobility spectrum related disorders which include joint instability, chronic pain, fatigue, gastrointestinal dysfunction, and cardiac dysautonomia. 

Jane is an active researcher and is Chair of the Allied Health Professions EDS Society working group consortium. She has authored more than 100 research and clinical education publications and webinars on hypermobility and Ehlers-Danlos syndromes.

When to Get a Child Tested for EDS – Dr. Sarah Schwartz

Dr. Schwartz is a pediatrician at the Hospital for Sick Children and an assistant professor at the University of Toronto in Toronto, Canada. Alongside an outstanding inter-disciplinary team, she founded the SickKids Pediatric EDS Clinic in 2017 and continues to care for patients as the Clinic Pediatrician. She is the Medical Director of Pediatric Medicine Clinics and the Program Director of Pediatric Medicine Fellowships at the University of Toronto and Hospital for Sick Children.

hEDS In Pediatric Patients – Dr. Ellen Elias

I am a pediatric specialist board certified in Clinical Genetics and direct the Special Care Clinic at Children’s Hospital Colorado, where children receive care for their genetic and medical disorders. I have long cared for patients with Ehlers-Danlos syndrome.

A new Ehlers-Danlos Syndrome (EDS) Center of Excellence was established in November 2019, with the aim of facilitating an interdisciplinary approach to the complex management of these patients. Our team is a multidisciplinary group of both pediatric and adult specialists. I am an active member of the International EDS Pediatric Consortium where we are working to develop a pediatric approach and classification system for younger patients. I write journal articles with this group, as well as speak at and lead sessions at EDS conferences. I have delivered invited talks on EDS at national meetings including at the AAP NCE conference in 2020 and the ACMG National meeting in 2021.

Keeping Children Active: Physical Therapy – Patricia Stott

Patricia Stott specializes in HSD/EDS with a background in physical therapy, athletic training, hand therapy, functional medicine, herbalism, and yoga. Her practice focuses on establishing a better health and wellness base for those with HSD/EDS through consultation services and in office manual treatments focusing on the neural and autonomic systems. 

Keeping Children With EDS & HSD Active: A Podiatrist’s Perspective – Sophie Roberts

Sophie qualified with a BSc (hons) in 1998 from the University of Brighton as a podiatrist and completed her MSc in 2009. Sophie is dedicated to her clinical work and has a wealth of experience in the podiatric management of biomechanical, sports, rheumatological and neurological foot disorders. She lectures regularly on the world stage in podiatric biomechanics, gait analysis and orthotic management, and has a special interest in Hypermobility. She is also a contributing author in the Oxford textbook of Sports Medicine 2nd Edition and worked alongside world experts in other disciplines of sports medicine in the Athlete’s village at the London 2012 Olympic games. Sophie is becoming a leader in her profession as a specialist in hypermobility disorders.

The Pre-Pubescent Years & Keeping Children Active Q&A Session

School Adaptations and Occupational Therapy – Dr. Jess Salyers

Dr. Salyers has provided effective, evidenced- based, collaborative occupational therapy to children and their families for more than ten years. Prior to being an occupational therapist, she served children and adults as a social worker and a recreational therapist. As an occupational therapist, she has worked in multiple practice settings: medical outpatient therapy, home and community based, acute care/trauma, in the schools, and in the neonatal intensive care unit (NICU). 

Dr. Salyers has served as a program director and therapy department manager. She is an effective leader, manager, and grant writer. Dr. Salyers enjoys mentoring, training, and teaching students from diverse backgrounds. Dr. Salyers’s dedication to her work is evident as she continuously seeks professional growth. As an occupational therapist, she completed a fellowship, served as faculty at the University of Arizona Department of Pediatrics, and pursued her post-professional clinical doctorate.

‘Regulate’ – A Parent’s Guide to Emotional Dysregulation – Dr. James Kustow

Dr James Kustow is a London-based Consultant Psychiatrist, and National Adult ADHD specialist. James works in the NHS, has a private practice in London, and is the Medical Director of The Grove Practice, an internationally respected mental health training provider.  
Over recent years he has developed a particular interest in the overlap between ADHD and hypermobility (and related) disorders. James is the Training Programme Director of UKAAN (the main professional organisation for Adult ADHD). 

Holistic Approaches to Care for Children and Adolescents with Hypermobility and EDS – Constance O’Connor

Connie O’Connor is the Nurse Practitioner/Clinical Lead for the Ehlers-Danlos Syndrome and Connective Tissue Disorders Program at SickKids in Toronto, Ontario, Canada. Connie obtained both her Bachelor of Science in Nursing and her Master of Nursing at the University of Toronto, where she now holds a Clinical Adjunct appointment. She is a member of the Pediatric Working Group for the Ehlers-Danlos Society Consortium.

Things to Assist Children in Daily Life Q&A Session

Fabricated or Induced Illness (FII): An Exploration of Issues Within the United Kingdom – Emma-Louise Williams

Emma Louise Williams is known for her work as an independent child protection expert within the specialisms of Fabricated or Induced Illness (FII) and rare disease. Emma has historically been called upon by the national media as well as local authorities and legal professionals in order to act as an expert or signpost in relation to cases involving Fabricated or Induced Illness and Non-Accidental Injury. Known for her success as an advocate and exceptional statement and letter writing skills, Emma has contributed to the independent review into children’s social care in the UK as part of the AHEAD Coalition. Emma’s key interests include how poor historical familial medical care and associated parental anxiety contribute to allegations of FII and how lack of appropriate medical intervention can detrimentally affect children with Ehlers-Danlos Syndrome being able to enjoy daily living as best possible in line with their peers.

Case Study on a Child with EDS: Physical Therapy – Patricia Stott

Patricia Stott specializes in HSD/EDS with a background in physical therapy, athletic training, hand therapy, functional medicine, herbalism, and yoga. Her practice focuses on establishing a better health and wellness base for those with HSD/EDS through consultation services and in office manual treatments focusing on the neural and autonomic systems.

Case Studies on Children with EDS: Podiatry – Sophie Roberts

Sophie qualified with a BSc (hons) in 1998 from the University of Brighton as a podiatrist and completed her MSc in 2009. Sophie is dedicated to her clinical work and has a wealth of experience in the podiatric management of biomechanical, sports, rheumatological and neurological foot disorders. She lectures regularly on the world stage in podiatric biomechanics, gait analysis and orthotic management, and has a special interest in Hypermobility. She is also a contributing author in the Oxford textbook of Sports Medicine 2nd Edition and worked alongside world experts in other disciplines of sports medicine in the Athlete’s village at the London 2012 Olympic games. Sophie is becoming a leader in her profession as a specialist in hypermobility disorders.

Community Voices – Mackenzie Abramson

Please note that these presentations and materials are provided for your personal, educational use. They remain the intellectual property of the presenters with all rights reserved, and cannot be reproduced without permission. The Society is not responsible for the content of presentations.

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