2020 Virtual Summer Conference – Day 3

Watch the presentations from Day 3 of the Virtual Summer Conference 2020

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Self Management and Effective Doctor Appointments

Shani Weber

Shani Weber is Community and Advocacy Director for The Ehlers-Danlos Society. No longer able to continue her career as a Special Education Teacher due to her hypermobile EDS, she became a volunteer with the Ehlers-Danlos Society in 2012. Shani is the moderator for The Ehlers-Danlos Society’s support community on Inspire (https://www.inspire.com/groups/ehlers-danlos-syndromes/) and assists patients and doctors from around the world who contact the Helpline. She is also a patient advocate for the organization, speaking with national and state government representatives and the medical community about EDS and issues that concern us. Additionally, Shani co-founded and co­-leads the Maryland EDS support group which now has over 350 members. Shani received her Master’s degree in Early Childhood Special Education and in Early Childhood Development from the George Washington University and her Bachelor’s degree in Elementary Education from Old Dominion University.

EDS ECHO – Advocacy

Prof Lara Bloom

Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Before joining the Ehlers-Danlos Society Lara ran EDS UK from 2010-2015. Commemorating ten years in the field of patient advocacy for the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), chronic illnesses, and rare diseases, Lara was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020. 

Reflections from an EDS ECHO Advocate

Autism, EDS and HSD

Dr Carolina Baeza-Velasco

Carolina Baeza-Velasco is Associate Professor on Psychopathology at Paris Descartes University – Sorbonne Paris Cité, and researcher at the Department of Emergency Psychiatry and Post-Acute Care of the University Hospital of Montpellier in France. She is clinical psychologist (University Andres Bello, Chile) with a master degree and a PhD in psychopathology by the Autonomous University of Barcelona. Her PhD thesis focused on the psychopathology associated to the Joint Hypermobility Syndrome under the direction of Prof. Antonio Bulbena. Dr. Baeza-Velasco subsequently obtained her Habilitation for Research Training (“Habilitation à diriger des recherches”) at the University Paris Descartes. Her professional background includes clinical and research experiences in several health institutions in France, Spain, and Chile. Her main research interests are the psychopathology and neurodevelopmental problems associated to joint hypermobility and hypermobility related disorders as well as the psychosocial factors associated to pain and disability in chronic painful conditions. Dr. Baeza-Velasco is author of several articles in peer-review journals about the psychological factors of hEDS, and she has international research collaborations regarding hypermobility with Prof. A. Bulbena (Spain), Prof. R. Grahame (UK), Prof. J.F. Bravo (Chile), Prof. C. Hamonet (France), and Dr. M. Castori (Italy).

Supporting people with ADHD

Dr James Kustow

I studied medicine in Nottingham and trained in psychiatry with the South London and Maudsley NHS Foundation Trust (Guys and St Thomas’ hospitals) and at St Mary’s Hospital. I am a general adult psychiatrist and have experience working with the full range of mental health problems that are encountered in adulthood. In addition to my private practice, which has been built gradually over 15 years, I continue to work as an NHS Consultant Psychiatrist in London. One of my main areas of specialist expertise is Adult ADHD. I work in one of the very few London-based NHS specialist Adult ADHD services. I am on the Executive Board of UKAAN (the main professional organisation for Adult ADHD in the UK) and I am UKAAN’s Training Programme Director. The comprehensive training programme UKAAN offers is highly respected in the UK and recognised internationally for its quality. I lecture widely on the topic of Adult ADHD and its management. I am also Medical Director of ‘The Grove Practice’, an established central London psychotherapy and training organisation. The Grove is currently involved in providing specialist trauma-focussed therapy for those affected by the Grenfell Tower disaster.

Q&A Session with Drs Beaza-Velasco and Kustow

Community Voices

Deatra Bear

Principles of Physical Therapy

Dr Leslie Russek

Leslie Russek, PT, DPT, PhD, OCS, is a professor teaching musculoskeletal physical therapy in the Clarkson University Doctor of Physical Therapy program. She is an Orthopedic Certified Specialist with a sub-specialization in hypermobile Ehlers-Danlos syndrome, headaches, fibromyalgia, and other causes of chronic pain. She has published in the areas of hEDS, fibromyalgia and chronic pain, and was one of the first physical therapists to publish on hypermobility syndrome in the United States. Her current research is looking at prevalence of hEDS among physical therapy patient populations in the U.S. She continues to treat patients in her specialty areas through the Canton-Potsdam Hospital Physical Rehabilitation clinic.

Pros and Cons of Joint Surgery

Dr Cathy Raggio

Dr. Raggio is a pediatric orthopedic surgeon with over 30 years experience and specializes in the disorders of the spine , skeletal dysplasias and metabolic bone and connective tissue disorders.

Q&A Session with Drs Russek and Raggio

Community Voices

Liane Froneman

Liane Froneman is a retired Organisation Psychologist living in Sydney, Australia. She has worked in Private Practice and taught part time at university. This is her personal experience of living with h-EDS, (she makes no medical claims), and how she continuously strives to improve her Quality of Life.

Investigation and Medical Treatment of GI Concerns

Prof Qasim Aziz

Professor Aziz completed his undergraduate medical training in his native Pakistan in 1983. After this, he came to the United Kingdom for higher medical training. He started his research career at the University of Manchester and obtained his PhD in 1996. He is now Professor of Neurogastroenterology at Barts and The London School of Medicine and Dentistry at Queen Mary, University of London. Professor Aziz’s research focuses on understanding the neurophysiological basis of human brain-gut communication. He has made an important contribution to the understanding of how gut pain is processed in the brain, and how both inflammation/injury to gut nerves and psychological factors can lead to the development of chronic gut pain. 

Nutritional Approaches to Treating GI Concerns

Dr Heidi Collins

Dr. Collins received her medical degree from Northwestern University in Chicago, IL and completed her residency in physical medicine and rehabilitation at the University of Washington in Seattle, WA. She is board certified in physical medicine and rehabilitation. Dr. Collins provides care to patients with a wide variety of diagnoses, including: chronic musculoskeletal or neuropathic pain, work-related injuries, multiple sclerosis, muscular dystrophy, progressive neurodegenerative disorders and movement disorders, stroke, traumatic brain injuries, orthopedics and general rehabilitation.

Q&A Session with Prof. Aziz and Dr Collins

Fast Heart Rate, Low Blood Pressure

Dr Peter Rowe

Dr. Rowe’s clinical interests and research are focused on medical conditions characterized by chronic fatigue. His work first described an association between treatable circulatory disorders and chronic fatigue syndrome (CFS), and has also brought to light several novel contributors to fatigue. These include connective tissue laxity and Ehlers-Danlos syndrome as risk factors for both orthostatic intolerance and CFS, the importance of milk protein intolerance as a contributor to symptoms in adolescents and young adults with CFS, and abnormal range of motion in soft tissues and nerves as a biomechanical contributor to CFS symptoms. His research has been funded by the National Institutes of Health, the US Department of Defense, the Solve ME/CFS Initiative, and several smaller foundations, as well as by private philanthropy. He has directed the Chronic Fatigue Clinic at the Children’s Center since 1996, where he is the inaugural recipient of the Sunshine Natural Wellbeing Foundation Chair in Chronic Fatigue and Related Disorders.

Anxiety and Hypermobility

Dr Jessica Eccles

Jessica Eccles trained in medicine at University of Cambridge and University of Oxford, completing a BA in The History and Philosophy of Science, sparking a keen interest in philosophy of mind and brain-body interactions, and since graduation from medical school has pursued a combined academic clinical path at Brighton and Sussex Medical School. As an MRC Clinical Research Training Fellow she recently completed her PhD in the relationship between joint hypermobility, autonomic dysfunction and psychiatric symptoms and is now an NIHR Academic Clinical Lecturer. She holds honorary clinical contracts with both Sussex Partnership NHS Foundation Trust and Brighton and Sussex University Hospitals NHS Trust.

Q&A Session with Drs Rowe and Eccles

Ask the Specialists Live with Dr Francamano, Dr Hakim, Prof. Malfait, Dr Simmonds, Prof. Aziz and Shani Weber

2020 Virtual Summer Conference Awards

Lifetime Achievement Award
Dr. Alan Pocinki
Outstanding Consortium Member
Dr. Nigel Burrows
Nancy Rogowski Advocate of the Year
Chrystal Nichols
Pioneer in EDS and HSD Research
Dr. Jessica Eccles
Pioneer in EDS and HSD Clinical Care
Dr. Fraser Burling

Zebras Got Talent 2020 Winners


1st Place
Kristina (Kicki) Samuelsson – Video Performance

2nd Place
Manuella Aristizabel – Cooking

3rd Place
Angela Schusse-Warren – Dance

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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