2021 Virtual Summer Conference – Day 2 – ES

Vea las presentaciones del Día 2 de la Conferencia Virtual de Verano de 2021

Introducción a las Sesiones 5 y 6 – Dr. Alan Hakim

Dr. Alan Hakim

I am an Acute Physician and Rheumatologist with a specialist interest in heritable disorders of connective tissue. I received my Bachelors and Masters degrees in Medicine from Cambridge University and Addenbrookes Hospital; trained in Medicine at Addenbrookes in Cambridge and then University College London Hospitals, and received my consultant certification and Fellowship of the Royal College of Physicians in 2000 and 2005 respectively.

It was a privilege to serve as the Chief Medical Officer of The Ehlers-Danlos Society through to 2020. I now support the Society as the Chief Operating Officer. I continue as a Member of the Society’s Medical and Scientific Board and as a Member of the Steering Committee of The International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders.

Presentación: Marcar ritmos y objetivos, y cómo entender la propia motivación  – Dra. Penelope Cream

Penelope Cream holds dual qualifications as both a Clinical and a Health Psychologist. She has worked in the fields of the psychology of complex medical conditions, long-term health problems and experiences of hospital treatment in many of London’s large teaching hospitals since 2001. Penelope has many years’ experience working with people who have multiple conditions, who are managing the impact of their health on their work, psychological well-being, everyday life and relationships.

Debate: Ansiedad e hipermovilidad – Dr. Stephen Porges

Stephen W. Porges, PhD, is Distinguished University Scientist at Indiana University where he is the founding director of the Traumatic Stress Research Consortium. He is Professor of Psychiatry at the University of North Carolina, and Professor Emeritus at both the University of Illinois at Chicago and the University of Maryland. He served as president of the Society for Psychophysiological Research and the Federation of Associations in Behavioral & Brain Sciences and is a former recipient of a National Institute of Mental Health Research Scientist Development Award. He has published more than 300 peer‐reviewed scientific papers across several disciplines including anesthesiology, biomedical engineering, critical care medicine, ergonomics, exercise physiology, gerontology, neurology, neuroscience, obstetrics, pediatrics, psychiatry, psychology, psychometrics, space medicine, and substance abuse. In 1994 he proposed the Polyvagal Theory, a theory that links the evolution of the mammalian autonomic nervous system to social behavior and emphasizes the importance of physiological state in the expression of behavioral problems and psychiatric disorders. The theory is leading to innovative treatments based on insights into the mechanisms mediating symptoms observed in several behavioral, psychiatric, and physical disorders.

Presentación: Gestionar el TDAH – Dr. James Kustow

Dr. James Kustow is a Consultant Psychiatrist based in the UK. Dr Kustow has a particular interest in Adult ADHD. He is on the Executive Board of UKAAN (the main professional organization for Adult ADHD in the UK) and is their Training Programme Director.

Preguntas y respuestas – La conexión entre el cuerpo y la mente

Presentación: Autogestión: Vivir con  Síndrome de Ehlers-Danlos – Stephanie Carroll

Stephanie is a Registered Nurse who lives and works in Rhode Island, USA. She works alongside Dr. Pradeep Chopra in a pain management clinic with a special focus on complex condition management. Stephanie provides nursing care daily to patients with Ehlers-Danlos syndromes and helps patients to manage their symptoms on a day-to-day basis. Stephanie is involved in public speaking, volunteering, teaching, research, advocacy work, and spreading awareness for EDS and its comorbid conditions.

Presentación: Gestión y manejo del dolor – Dr. Pradeep Chopra

He is a Pain Medicine specialist. He did his Residency in Anesthesia and Critical Care, Fellowship in Pain Medicine – from Harvard Medical School.  Currently an Assistant Professor (Clinical) at Brown Medical School and works full time as a Pain Medicine specialist. He has a special interest in chronic complex pain conditions and their associated co-existing conditions. He has several publications to his credit and is on the editorial board for a journal on pain. Serves on the medical advisory board for several chronic pain conditions, former chairman of the EDS International pain consortium. National awards including Compassionate care award, Lifetime achievement awards, humanitarian award.

Presentación: Gestión y manejo de la fatiga – Dr. Alan Pocinki

Dr. Pocinki is a general internist in Rockville, Maryland. He has been interested in the joint hypermobility syndromes and related autonomic and sleep disorders since the late 1990’s, and speaks regularly on these subjects at local and national meetings. He has received a variety of awards for service to his profession and his patients, most recently the American College of Physicians Leadership Award and the Ehlers Danlos Society’s Lifetime Achievement Award.

Preguntas y respuestas – Dolor y fatiga

Introducción a las Sesiones 7 y 8 – Shani Weber

Shani Weber is the Community and Advocacy Director for the Ehlers-Danlos Society. She obtained her master’s degree from George Washington University and was an Early Childhood Special Education teacher prior to developing disabling symptoms that led to a diagnosis of Hypermobile EDS. Shani is honored to be able to continue educating and helping people with the Ehlers-Danlos Society.

Presentación: Apoyar a niños/as y adolescentes con SED (EDS) y TEH (HSD)  – Sarah Schwartz

Sarah Schwartz is a pediatrician at the Hospital for Sick Children in Toronto, Ontario, Canada and an assistant professor at the University of Toronto. She was involved in the development and implementation of the first pediatric EDS clinic in Canada, which was launched in 2017. She continues to work closely with the Hospital for Sick Children EDS Clinic multi-disciplinary team as the program’s pediatrician.

Dr. Schwartz is a graduate of McGill University Medical School, the New York University (NYU) Pediatric Residency Program, and the Hospital for Sick Children Academic General Pediatrics Fellowship Program. She also completed a Masters in Education at the University of Toronto.

Having worked at the Hospital for Sick Children for over a decade, Dr. Schwartz is actively involved in clinical care, medical education and leadership activities. As the Program Director of the Division of Pediatric Medicine Fellowship Programs since 2014, she has been successful in developing and growing a training program that encompasses Academic General Pediatrics, Pediatric Hospital Medicine, Community Pediatrics, Child Maltreatment Pediatrics, Pediatric Palliative Care and Pediatric Dermatology. As the Director of Ambulatory Pediatrics for the Division of Pediatric Medicine since 2012, she has been part of leading a significant shift in models of care.

Taller: Cuidados para cuidadores/as: Cuidados personales sensoriales diarios en microments  – Cristol O’Loughlin

Cristol Barrett O’Loughlin is a seasoned executive and storyteller. A former UCLA instructor, she is humbled to advise global brands: NBA, Disney, Fox, Cisco Systems and Google. During her tenure at IBM Life Sciences, she helped accelerate advancements in cheminformatics and biotechnology. As Founder & CEO of ANGEL AID CARES, Cristol is fiercely passionate about providing emotional relief to mothers of children with rare diseases. Watch her TEDx talk here.

Taller: Mantenernos activos/as – Dra. Jane Simmonds

Jane is a member of the EDS Society Medical and Scientific Board and is a medical advisor to Ehlers Danlos Support UK, the Hypermobility Syndromes Association (HMSA) and PoTS UK. Moreover she is Chair of the international physiotherapy EDS working group committee. Jane has authored more than 50 publications on EDS and hypermobility related topics and leads national and international EDS and hypermobility CPD training events for health and exercise professionals.

Presentación: Las voces de la comunidad – Katya Kozary

Katya is a 26 year old Digital Content Creator from London with hEDS and many other co-morbidities that present alongside it. With a Psychology BSc, and several years working in Film Production, Katya now creates free content on the platform @positivelychronictravels (Instagram and Website) to share tips, insights and experiences about life and travel with multiple chronic illnesses. The mission is to help streamline other people’s journeys with similar illnesses and connect with the community.

Preguntas y respuestas – Niños/as y adolescentes con SED (EDS) y TEH (HSD) 

Presentación: Ayudas para la vida diaria – Maggie Buckley

Maggie Buckley

Maggie Buckley has been a Patient Advocate for more than 25 years while living with the chronic pain condition Ehlers-Danlos syndrome. She currently serves on the board of PainCommunity.org. and volunteers in many roles for The Ehlers-Danlos Society (Conference Speaker, International Consortium Pain Working Group, Comorbidity Coalition Member, and Advisor to the Board). Additionally, she is a member of the PCORI Editorial Review Board. She participates as a member of the Stakeholder Advisory Group on the PCORI-funded EMPOWER pain research project at Stanford University. Previously, she served on the Board of Directors of Ehlers-Danlos National Foundation and American Pain Foundation. She served as the Patient Liaison to the Board of Directors of the Academy of Integrative Pain Management — the only healthcare professional organization with patient representation at that level. Other volunteer experience has been with Northern California Pain Care Initiative, National Fibromyalgia Association, American Cancer Society, Special Olympics, and NORD. She has an undergraduate degree in Social Work and an MBA in accounting with experience in banking and business management. In 2019 she became a Board Certified Patient Advocate. She has testified at local, state and federal policy hearings, spoken at conferences and in the media, written articles, and coached hundreds of people to self-advocate for better care.

Taller: Vivir con una endermedad rara como adolescente – Seth Rotberg, Emily Hall, Marcelle Longdale: Our Odyssey

Seth Rotberg

Seth is a patient advocate, community connector, and motivational speaker who is passionate about bringing his personal experience to support the health community. His passion is driven by his mother’s 17-year battle with the rare, genetic disease known as Huntington’s Disease (HD). In 2019, Seth co-founded the nonprofit, Our Odyssey, to provide year-round support to young adults impacted by a rare or chronic condition. Follow him on Twitter/Instagram at @srotberg15.

Emily Hall

Emily is a determined advocate for the rare and chronic illness community through her education, work, and volunteer experiences. She holds many certifications related to healthcare and personal assistance of multiple types. Emily has hEDS (hypermobile Ehlers-Danlos syndrome), Lyme Disease, and many other health conditions. She enjoys volunteering with Our Odyssey, supporting the LTA(Lymphedema Treatment Act) and the CLA (Center for Lyme Action), and spending time on adventures in good company.

Marcelle Longlade 

Marcelle Longlade is a biomedical engineer and a devoted entrepreneur. She has complex health conditions, mainly FMF, Narcolepsy Type 1, and hEDS. She created the Chronically Surviving advocacy blog, sharing excerpts from her life, and where others feel open to share too. A Registered Yoga Teacher and Reiki Practitioner, Marcelle offers mindfulness and wellness services geared for those with chronic health conditions. She volunteers as Our Odyssey’s Blog Lead, helping others share their stories.

Taller: Trabajar con tu equipo de profesionales de la salud – Shani Weber

Shani Weber is the Community and Advocacy Director for the Ehlers-Danlos Society. She obtained her master’s degree from George Washington University and was an Early Childhood Special Education teacher prior to developing disabling symptoms that led to a diagnosis of Hypermobile EDS. Shani is honored to be able to continue educating and helping people with the Ehlers-Danlos Society.

Presentación: Nutrición e hidratación – Lorna Ryan

LORNA RYAN, MA, DipION, mBANT, rCNHC
Lorna Ryan is a registered Nutritionist/Nutritional Therapy and Lifestyle Medicine Practitioner specialising in supporting those with Hypermobility (hEDS/HSD) & has a particular interest in gastrointestinal symptoms. Lorna is committed to continued research & is a member of the Diet and Nutrition working group of the of the International Consortium, Ehlers-Danlos Society. Lorna works in private practice, for more information email lorna@lornaryanhealth.com

Preguntas y respuestas – Ayudas para la vida diaria

Ceremonia de premios y despedida  – Prof. Lara Bloom

Tenga en cuenta que estas presentaciones y materiales se proporcionan para su uso personal y educativo. Siguen siendo propiedad intelectual de los presentadores con todos los derechos reservados y no pueden reproducirse sin permiso. La Sociedad no se hace responsable del contenido de las presentaciones.