Community Day – DE

EDS ECHO Veranstaltungsreihe: Schmerzmanagement: eine europäische Schmerzperspektive – Community Day

Begrüßung zu Sitzung 1 und 2 – 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. 

Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert. 

Lara regularly works with umbrella organisations lobbying at government level internationally. In addition to her role as President and CEO of The Ehlers-Danlos Society, she is the Global Ambassador for Global Genes and Advocacy Committee Member for Rare Diseases International, Co-Investigator in the NIHR CONCORD: CO-ordiNated Care Of Rare Diseases, Expert Advisor in the European Reference Network Groups RECONNECT & VASCERN, Expert Advisor to PARADIGM & EPF, Working Group Member of the GenTAC Alliance Patients, Families, and Clinicians, and a Patient Group Consultative Forum Member for the Medicines and Healthcare Products Regulatory Agency.    

In 2016 Lara completed expert-level training in medicines research and development and became a fellow of the European Patients Academy EUPATI. 

Lara played a key role in the recent international effort to re-classify EDS and create management and care guidelines. She was a published author on the subsequent classification publication in the American Journal of Medical Genetics (AJMG) March 2017 and serves on the steering committee of the International Consortium for EDS and Related Disorders. 

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. 

Schmerzmedikamente – Dr. Hani Hattar

Hani Hattar, senior consultant at Pain Unit, Västerviks Hospital in Sweden. I am a specialist in pain medicine, geriatrics and rehabilitation medicine. I have been working with EDS/HSD since 1993. My interest is management and rehabilitation in EDS/HSD. 

Komplementäre Therapien, inklusive Sauerstofftherapie – Dr. Isabelle Brock

Performs clinical research and consults EDS patients at QoLify (Quality of Life improvements for you), 3 Pillars Therapeutics and ClinicalParadigms.  Researcher at Indiana University Dep of Medical and Molecular Genetics. 7 years of experience in EDS research including opening clinics solely dedicated to EDS and its comorbidities. Member of the International Consortium; Co-Chair GERSED, France, honorary president GERSED, Belgium; CSO EDS Initiative Deutschland, scientific board FRAME, NYC.

Kognitive Verhaltenstherapie – Dr. Chad Shepherd

Dr. Chad Shepherd is a Clinical Psychologist, part of the Psychology Team within the London Hypermobility Network. He has special interest working with HSD (Hypermobility Spectrum Disorder)/hEDS (hypermobility Ehlers-Danlos Syndrome). He works with children and adults treating chronic pain, fatigue, poor sleep, health problems, chronic stress, anxiety, low mood, and trauma. He specializes in Cognitive Behavioural Therapy (CBT), and EMDR (Eye Movement Desensitization Reprocessing). 

Die Rolle von Physiotherapie bei der Behandlung von Schmerzen – Inge De Wandele

Inge De Wandele, is working as a physiotherapist at the Centre for Medical Genetics in Ghent University Hospital. Her task is to provide individualized advice regarding the She is currently developing information for patients with EDS, HSD and their caregivers. Inge specialized in sports physiotherapy and manual therapy at Ghent University. She is involved in research regarding pain, dysautonomia and shoulder instability in hEDS/HSD and other heritable connective tissue disorders. 

Verletzung, Heilung und Pflege der Haut – Dr. Nigel Burrows

Dr Nigel Burrows is a consultant dermatologist at Addenbrooke’s Hospital, Cambridge University Hospitals NHS Foundation Trust. After his postgraduate training he completed an MD in Cambridge on the Molecular Genetics of the Ehlers-Danlos syndromes (EDS). He runs a genodermatoses clinic with a special interest in the Inherited Disorders of Connective Tissue. He is a past President and Secretary of the BSPD. He is a Medical Advisor for the two UK EDS patient support groups, a committee member of the International EDS consortium and Chair of the International EDS skin working group. He has written the book chapters on Inherited Disorders of Connective Tissue for Rook’s Textbook of Dermatology, Harper’s Textbook of Pediatric Textbook, Dermatology (Bolognia) and the Oxford Textbook of Medicine. 

Patienten-Stimme – Das Leben mit Schmerzen und Hautverletzungen bei cEDS – Dominique McGinn

My name is Dominique McGinn, I am a Primary School teacher from Scotland. I am 25 years old and was diagnosed with Classical Ehlers Danlos Syndrome at age 3. My dad and younger brother also have EDS. I enjoy talking about my diagnosis and as a teacher I love learning new things and educating others about EDS. I am very creative and have found that sharing my experiences through writing stories and poems about EDS has been very comforting to me and others who suffer with EDS.

Q&A

Begrüßung zu Sitzung 3 – Inge De Wandele

Inge De Wandele, is working as a physiotherapist at the Centre for Medical Genetics in Ghent University Hospital. Her task is to provide individualized advice regarding the She is currently developing information for patients with EDS, HSD and their caregivers. Inge specialized in sports physiotherapy and manual therapy at Ghent University. She is involved in research regarding pain, dysautonomia and shoulder instability in hEDS/HSD and other heritable connective tissue disorders. 

Ergotherapie, Handschmerzen und Handfunktion – Nathalie Schelpe

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My name is Nathalie and I work as a hand therapist and maker of orthopaedic instruments in my own practice. I already knew at an early age that I would do ‘something with hands’. Many years later I was able to combine this both literally and figuratively: treating patients who are experiencing problems with their hands and creative activities in my studio. In the meantime, I have gained many years of experience as a hand therapist in my own country as well as abroad. 

Kümmere dich um deine Füße – Wie Podologinnen helfen können – Sophie Roberts

Sophie is a Specialist Musculoskeletal Podiatrist with a wealth of experience in the podiatric management of biomechanical, sports, rheumatological and neurological foot disorders. She lectures regularly in podiatric biomechanics, gait analysis and orthotic management, and has a special interest in Hypermobility. She is part of the London based Hypermobility Unit  and she is also a contributing author in the Oxford text book of Sports Medicine 2nd Edition. 

Q&A

Begrüßung zu Sitzung 4 – 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. 

Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert. 

Lara regularly works with umbrella organisations lobbying at government level internationally. In addition to her role as President and CEO of The Ehlers-Danlos Society, she is the Global Ambassador for Global Genes and Advocacy Committee Member for Rare Diseases International, Co-Investigator in the NIHR CONCORD: CO-ordiNated Care Of Rare Diseases, Expert Advisor in the European Reference Network Groups RECONNECT & VASCERN, Expert Advisor to PARADIGM & EPF, Working Group Member of the GenTAC Alliance Patients, Families, and Clinicians, and a Patient Group Consultative Forum Member for the Medicines and Healthcare Products Regulatory Agency.    

In 2016 Lara completed expert-level training in medicines research and development and became a fellow of the European Patients Academy EUPATI. 

Lara played a key role in the recent international effort to re-classify EDS and create management and care guidelines. She was a published author on the subsequent classification publication in the American Journal of Medical Genetics (AJMG) March 2017 and serves on the steering committee of the International Consortium for EDS and Related Disorders. 

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. 

Verletzungen und Verrenkungen – Dr. Helen Cohen

Dr Cohen is a Consultant in Rheumatology and Chronic Pain at the Royal National Orthopaedic Hospital, Stanmore, U.K. She graduated from the University of Wales College of Medicine and completed her PhD at the Royal National Hospital for Rheumatic Diseases, Bath. She leads the Hypermobility and CRPS Rehabilitation Programmes, working closely with allied health professionals. Her interests include EDS/hypermobility, fibromyalgia and CRPS among other chronic, difficult-to-explain pain syndromes. 

Patienten-Stimme – Das Leben mit den Schmerzen bei vEDS – Faith Smith

Faith’s passion for advocacy in the health and science space started at a young age, as she watched her beloved family and friends struggle with their health growing up. This drive was further ignited with the passing of her baby sister later on and battling chronic health problems of her own. Wanting to help the lives of as many as possible with the resources available to her has shaped her to be who she is today. 

After experiencing two major life events that landed her in the hospital; And while working with some of the most supportive and encouraging medical professionals (who now make up her medical team) she was diagnosed with Vascular Ehlers-Danlos Syndrome otherwise known as vEDS. Because of her diagnosis experience, she is really passionate about encouraging better patient and medical profession relationships. Currently, Faith is an undergraduate at the University of Michigan studying Biochemistry and Psychology with a minor in Argumentation and Advocacy. She hopes that she can become a medical professional that can help bring innovation, creativity, and more empathy to a field that has the ability to change lives. 

When Faith is not studying or working full time as a recruiter or advocating, you may find her writing for her blog, cooking and developing recipes, gardening, or spending time with her family and her Silky Terrier named Chewy. 

Q&A

Begrüßung zu Sitzung 5 – Dr. Asama Fikree

Asma Fikree is a consultant neurogastroenterologist at the Royal London Hospital in the UK where she runs a tertiary gastrointestinal clinic for patients with EDS and severe functional GI disorders . After completing her PhD, confirming the association between hEDS and functional GI disorders, she remains research-active and is currently trying to explain the various intestinal manifestations in patients with EDS.

Magen- und Refluxschmerzen – Prof. Qasim Aziz

Professor Aziz completed his undergraduate medical training in his native Pakistan in 1983. After. He came to the United Kingdom for higher medical training, 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. 

Patienten-Stimme – Das Leben mit den Schmerzen bei Gastroparese – Jessica Hall

My name is Jess, I am 23 years old and was diagnosed with hEDS aged 20 after over 18 years of problems. I have always enjoyed using my flexibility to my advantage and tried to keep myself strong through dancing to a high level. I also recently qualified as a Paediatric Nurse in order to use my experiences living with chronic illness to help others. 

Begrüßung zu Sitzung 6 – Dr. Isabelle Le Ray

Dr. Isabelle Le Ray is a consultant at the Center for Integrative Systemic Medicine, in Paris. She earned her MD at the University of Paris, then specialized in Obstetrics and Gynecology and completed a PhD in Pharmacoepidemiology. She was a post-doctoral fellow at the Medical Epidemiology and Biostatistics department in Karolinska Institutet (Sweden). She has a special interest in EDS-related gynecologic problematics, especially pregnancy management, pelvic disorders and chronic pelvic pain. 

Beckengürtel-Schmerzen – Dr. Isabelle Le Ray

Dr. Isabelle Le Ray is a consultant at the Center for Integrative Systemic Medicine, in Paris. She earned her MD at the University of Paris, then specialized in Obstetrics and Gynecology and completed a PhD in Pharmacoepidemiology. She was a post-doctoral fellow at the Medical Epidemiology and Biostatistics department in Karolinska Institutet (Sweden). She has a special interest in EDS-related gynecologic problematics, especially pregnancy management, pelvic disorders and chronic pelvic pain. 

Blasenschmerzen – Prof. Xavier Deffieux

Xavier Deffieux is a full professor of obstetrics and gynecology at the University of Paris-Saclay (France) and head of the gynecological surgical department at Antoine Beclere Hospital (Assistance Publique Hôpitaux de Paris, Clamart). After graduating from the University of Bordeaux, he specialized in Obstetrics and Gynecology in Paris (gold medal of the surgery residency and fellowship), and obtained a Ph.D. in cognitive & neurosciences (perineal neuro-physiology) from the University Pierre & Marie Curie (Paris). He serves in many national and international expert committees such as the I.C.I. (International Consultation on Incontinence). His main research areas are pelvic organ prolapse surgery and incontinence pathophysiology. He is author of over 200 peer-reviewed publications. He is Editor in chief of Progrès en Urologie Pelvi-Périnéologie. 

Patienten-Stimme – Mit Blasenschmerzen leben – Stacey Simmonds

Stacey Simmonds is the Events and EDS ECHO Director at the Ehlers-Danlos Society. Today Stacey will share her story from a patient’s perspective about her lifelong experiences living with bladder pain, and hypermobile mobile Ehlers-Danlos syndrome.

Q&A

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