Dr. Andrew J. Maxwell, M.D. FACC | The Embryology, Potential Mechanisms that Tie Together The Pentad The ILC Ehlers Danlos & Chronic Pain Foundation 2026-09-22 | Dr. Andrew J. Maxwell, M.D. FACC | The Embryology, Potential Mechanisms that Tie Together The Pentad
Quality of Life Indicator of Misunderstood Symptomology of EDS/HSD | Dr. Kim Daniel, M.ED, PhD The ILC Ehlers Danlos & Chronic Pain Foundation 2025-01-30 | Dr. Kim Daniel, M.ED, PhD, shares her presentation on the Quality of Life Indicator of Misunderstood Symptomology of EDS/HSD. She speaks about her personal experience and understands the patient perspective.Presented at our 2024 conference: Understanding EDS/HSD+ Symptomology, Diagnoses & Treatment - A Guide for Primary Care Practitioners & Physician Specialists. Our mission at EDS Canada Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.orgBelow you will find a brief summary of Dr. Kim Daniel's presentation:This presentation explores the significance of assessing quality of life (QOL) in patients with EDS and HSD. The speaker, Kim S Daniel, a professor, research scientist, clinician, and individual living with EDS and HSD, emphasizes the importance of understanding QOL in relation to these complex conditions. The presentation defines QOL as encompassing physical, mental, and functional aspects of an individual's life. It highlights the significant impact of EDS and HSD on QOL, leading to lower health-related QOL (HRQOL) and overall well-being. The presentation outlines various tools for assessing QOL, including: Interviews and Qualitative Assessments: In-depth interviews provide personalized insights into patient experiences, accounting for individual factors like gender, culture, and support systems. EDS Specific Questionnaires: These tailored instruments address specific challenges faced by individuals with EDS and HSD, focusing on areas like pain, mobility, fatigue, and psychological effects. The Short Form 36 Health Survey (SF-36): This widely used 36-item survey measures health status across various domains, including physical functioning, pain, and mental health. Patient Reported Outcome Measures (PROMs): These standardized surveys assess health outcomes reported by patients, providing valuable insights into treatment effectiveness and patient well-being. World Health Organization Quality of Life Measure: This culturally sensitive tool, available in 29 languages, provides a multi-dimensional profile of QOL across domains like physical health, psychological health, social relationships, and environment. Berkeley Wellbeing Survey: This user-friendly questionnaire focuses on subjective measures of well-being, excluding non-health factors. It assesses aspects like satisfaction with emotional experiences, self-confidence, and feelings of love and fulfillment. The presentation then uses a hypothetical "Patient X" to demonstrate how these tools can be utilized to evaluate QOL and identify areas for improvement. The speaker emphasizes the importance of tailoring assessment approaches to individual needs, especially for patients with cognitive challenges. The presentation concludes with a call to action, encouraging clinicians to recognize the profound impact of EDS and HSD on QOL and utilize appropriate tools to enhance the well-being of their patients.These slides present a comprehensive approach to enhancing a patient's quality of life, particularly focusing on those with Ehlers-Danlos syndrome and hypermobility spectrum disorders. The approach involves understanding a patient's perspective through open-ended questions, identifying areas for improvement, and implementing strategies to promote well-being. The presentation emphasizes the importance of assessing a patient's cognitive profile, physical health, and overall well-being. It then introduces seven key emotional skills, including positive self-care, sense of purpose, independence, relationships, emotional regulation, emotional awareness, and acceptance. These skills, identified by the Berkeley Wellbeing Institute, are crucial for fostering happiness. The presentation further highlights seven "happiness groups" that can serve as a framework for intervention: negative thinking traps, emotional intelligence, coping, social interactions, authenticity, forward movement, and positive thinking. Practical tips for improving a patient's quality of life include setting SMART goals, promoting pleasurable activities, tracking progress, reassessing progress, celebrating achievements, and considering the timing of assessments. The presenter underscores the significance of cultivating positive thinking as a means to enhance a patient's overall well-being. In conclusion, the presentation advocates for a collaborative approach between clinicians and patients, emphasizing the importance of careful assessment, culturally diverse interventions, and tailored strategies to address the unique challenges faced by individuals with complex syndromes like Ehlers-Danlos syndrome and hypermobility spectrum disorders.
Changing the Field of Medicine for EDS/HSD+ and Associated Conditions | Dr. Stephanie Grach, MD, MS The ILC Ehlers Danlos & Chronic Pain Foundation 2025-01-30 | Dr. Stephanie Grach, MD, MS, shares her presentation on A New Path Forward for Horses and Zebras: Changing the Field of Medicine for EDS/HSD+ and Associated Conditions.Presented at our 2024 conference: Understanding EDS/HSD+ Symptomology, Diagnoses & Treatment - A Guide for Primary Care Practitioners & Physician Specialists. Our mission at EDS Canada Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.orgBelow you will find a brief summary of Dr. Grach's presentation:Stephanie Grach, an assistant professor of medicine and attending physician at the Mayo Clinic, discusses the challenges of recognizing and managing multi-system complex chronic diseases, particularly hypermobile Ehlers-Danlos syndrome (HEDS) and hypermobility spectrum disorder (HSD). Grach highlights the historical neglect of these conditions within medicine, leading to under-diagnosis and misdiagnosis. She notes that while fibromyalgia has gained some recognition, it's often mistaken for HEDS/HSD, resulting in insufficient care for hypermobility-related pathologies. She emphasizes the crucial role of research in improving understanding and management of these conditions but acknowledges the limitations of relying solely on research advancements for widespread change. Grach addresses the need for effective communication strategies to bridge the knowledge gap between specialists and general practitioners, advocating for a shift in the medical paradigm that recognizes the significance of these complex conditions. She highlights the importance of incorporating HEDS/HSD into medical education, teaching learners to approach these conditions with the same seriousness as more familiar diagnoses. Grach stresses the need for accessible resources and tools for clinicians, advocating for a comprehensive toolkit that could include educational materials, research papers, algorithms, and templates to facilitate better understanding and management of HEDS/HSD. She concludes by calling for collaborative efforts to create and share resources that will improve medical practice and patient care experiences for individuals with hypermobile conditions.
Less Studied Comorbidities in Infection-Associated Chronic Illnesses | Beth Pollack, MIT The ILC Ehlers Danlos & Chronic Pain Foundation 2025-01-30 | Beth Pollack, Research Scientist at MIT, presents her research on Less Studied Comorbidities in Infection-Associated Chronic Illnesses. Her presentation includes newly discovered studies that are a world-first presented at our 2024 conference: Understanding EDS/HSD+ Symptomology, Diagnoses & Treatment - A Guide for Primary Care Practitioners & Physician Specialists. Our mission at EDS Canada Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.orgBelow you will find a brief summary of Beth Pollack's presentation:Beth Pollack, a research scientist at MIT, focuses on the connections between long COVID, ME/CFS, and connective tissue disorders. Her work highlights how these illnesses share common symptoms, risk factors, and triggers. Pollack emphasizes the high prevalence of hypermobility and connective tissue disorders in these conditions. Her research examines the impact of these illnesses on various organs, including the brain, spine, and reproductive system. She discusses the role of infections, environmental exposures, and physical injuries as potential triggers. Particularly, she examines the potential link between SARS-CoV-2 infection and the development of long-term susceptibility to other infections. Pollack also investigates sex differences, noting the disproportionate impact of these illnesses on women. She explores the potential role of testosterone levels and neutralizing antibody titers as possible explanations for this disparity. She underscores the importance of understanding the prevalence and mechanisms of spinal conditions in these illnesses. Her research calls for a multidisciplinary approach, involving scientists, clinicians, and patients, to identify research priorities, develop screening tools, and advance clinical trials. Pollack emphasizes the need for non-invasive treatments, high-resolution imaging, and multi-omic profiling to identify tissue-based biomarkers and understand the mechanisms of connective tissue damage. She also advocates for accessible and validated screening tools for spinal disorders, including potential low-risk assessments. Furthermore, she highlights the need for comprehensive research on reproductive health challenges in these illnesses, including infertility, endometriosis, and adverse pregnancy complications. Her presentation calls for further investigation into the role of sex hormones, the menstrual cycle, the reproductive tract microbiome, and potential biomarkers associated with connective tissue disorders. Finally, Pollack underscores the importance of addressing these understudied areas to improve understanding, diagnosis, and treatment of reproductive health conditions in individuals with infection-associated chronic illnesses.
Recognizing hESD & HSD, Differential Diagnoses | Dr. Andrew Maxwell, MD, Pediatric Cardiology The ILC Ehlers Danlos & Chronic Pain Foundation 2025-01-30 | Dr. Andrew Maxwell, MD, Pediatric Cardiology from the Heart of the Valley Pediatric Cardiology, presents his talk on Recognizing hESD & HSD, Differential Diagnoses. Presented at the November 2024 EDS Conference: Understanding EDS/HSD+ Symptomology, Diagnoses & Treatment - A Guide for Primary Care Practitioners & Physician Specialists. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.orgHere is a brief summary of Dr. Maxwell's presentation:This presentation, given by Dr. Andrew Maxwell, a pediatric cardiologist, focuses on understanding and diagnosing hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). These conditions are caused by genetic differences that affect connective tissue, the substance that holds our bodies together. While genes play a role, environmental factors also contribute to these disorders. Dr. Maxwell explains that hEDS/HSD can cause a range of symptoms, including loose joints, chronic pain, digestive problems, postural issues, difficulty with fine motor skills, and easy bruising/bleeding. He also introduces the "PENTAD" concept, a group of commonly associated conditions including dysautonomia (like POTS), digestive issues, allergies, mast cell activation syndrome, and autoimmune disorders. The presentation discusses the different types of Ehlers-Danlos syndromes, emphasizing hEDS and HSD. While the exact genes responsible for hEDS are still being researched, recent studies have identified potential mutations in the calocrine gene. Dr. Maxwell describes the 2017 criteria for diagnosing hEDS, which include: Criterion 1: Generalized joint hypermobility, assessed using the Beighton score. Criterion 2: Physical features, requiring at least five out of twelve specific signs, like stretchy skin, certain skin bumps, unusual scarring, crowded teeth, and specific hand features. Criterion 3: Ruling out other diagnoses, like other connective tissue disorders, autoimmune conditions, or other explanations for the symptoms. HSD diagnosis is simpler, requiring only two out of five positive responses on a hypermobility assessment. The presentation then highlights limitations of the 2017 criteria, especially for diagnosing hEDS in children and the potential for over-diagnosing HSD. In response, the International Consortium on Ehlers-Danlos Syndrome published updated criteria for diagnosing hEDS in children in 2023. These new criteria simplify the tissue feature requirements and incorporate comorbidities, emphasizing the importance of recognizing a wider range of symptoms beyond joint hypermobility. The presentation also emphasizes the need for ongoing research to refine diagnostic criteria, understand the underlying genetics, and develop better treatments for hEDS/HSD. A study involving 100 patients with Postural Orthostatic Tachycardia Syndrome (POTS) revealed a strong connection between POTS and hypermobility spectrum disorders (HSD). This study highlights the "PENTAD" concept, suggesting a strong link between HSD, dysautonomia (including POTS), mast cell activation syndrome (MCAS), digestive issues, and autoimmune diseases. The study also introduces the concept of "Syndrome of SAG" (sagging organs), proposing that hypermobile patients experience organ sagging, leading to various symptoms. This sagging can affect various organs, including the brain, skull, neck, airways, spine, veins, abdomen, diaphragm, and pelvic area. Finally, the presentation emphasizes the need for further research and collaboration between healthcare professionals and patient organizations to improve understanding and diagnosis of these complex conditions.
Integrative Clinical Management of hEDS and its Common Comorbidities | Dr. Brayden Yellman, MD The ILC Ehlers Danlos & Chronic Pain Foundation 2025-01-30 | In this highly educational presentation, Dr. Brayden Yellman, MD and Rheumatologist, from the Bateman Horne Center, presents his research on Integrative Clinical Management of hEDS and its Common Comorbidities: Unravelling the Complexities of EDS/HSDPresented at the November 2024 EDS Conference: Understanding EDS/HSD+ Symptomology, Diagnoses & Treatment - A Guide for Primary Care Practitioners & Physician Specialists. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.orgHere is a brief summary of Dr. Yellman's presentation:Brayden Yellman, MD, an internal medicine and rheumatology specialist at the Bateman Horne Center, discusses integrative clinical management of hypermobile Ehlers-Danlos syndrome (EDS), hypermobile spectrum disorders, and their common comorbidities. His presentation focuses on clinical management and thought processes, not specific product recommendations. Yellman emphasizes the significant overlap between HEDS and ME-CFS, highlighting common comorbidities such as POTS, mast cell activation syndrome, small fiber polyneuropathy, gastrointestinal dysmotility, central nervous system complications, and vascular abdominal pathology. He delves into the characteristics of ME-CFS, emphasizing the defining feature of post-exertional malaise (PEM), its triggers, and management strategies. Yellman advocates for pacing, energy conservation, and rest, cautioning against graded exercise therapy or the Levine protocol for ME-CFS patients with PEM. He also discusses low-dose naltrexone and dextromethorphan as potential pharmacological tools to reduce PEM. Regarding orthostatic intolerance, Yellman recommends assessing hours of upright activity per day, utilizing orthostatic intolerance questionnaires, and performing the nasoline test to diagnose postural orthostatic tachycardia syndrome (POTS). He explains the adaptive responses of the autonomic nervous system in orthostatic intolerance and highlights management strategies including fluid therapy, compression clothing, and various medications like fluoroquinolone, mitadrine, droxidopa, pyridostigmine, beta blockers, and evabridin. He emphasizes that exercise can exacerbate symptoms in ME-CFS patients with orthostatic intolerance. Yellman then focuses on mast cell activation syndrome (MCAS), outlining its common association with HEDS, POTS, and ME-CFS, and its impact on various symptoms including joint laxity, blood vessel pooling, and orthostatic intolerance. He details the diagnostic challenges of MCAS and treatment goals, which include reducing inflammation, improving connective tissue integrity, mitigating innate immune dysregulation, managing symptoms, and reducing triggers for neuroinflammation. He discusses treatment options like a low-histamine diet, histamine-reducing enzymes, H1 and H2 blockers, mast cell stabilizers, and anti-IgE biologics. He also addresses the exaggerated sympathetic nervous system response often seen in MCAS and its management strategies. Yellman concludes by discussing small fiber polyneuropathy, its impact on non-visceral pain, and the importance of addressing orthostatic intolerance to reduce pain in EDS patients. He explores musculoskeletal pain in EDS, common injuries, and the importance of physical therapy. He then discusses gastrointestinal complications, neuroanatomical complications, and other abdominal symptoms associated with EDS. The presentation concludes by highlighting the complexities of EDS and the importance of understanding its potential complications for providing comprehensive care to patients.
Thanks for Watching our 2024 Conference: Understanding EDS/HSD+ Symptomology, Diagnoses & Treatment The ILC Ehlers Danlos & Chronic Pain Foundation 2025-01-30 | Executive Director at EDS Canada Foundation Jacqueline Raposo wraps up our conference: Understanding EDS/HSD+ Symptomology, Diagnoses & Treatment - A Guide for Primary Care Practitioners & Physician Specialists Thank you to all the doctors, nurses, and patients who joined us for another successful and educational conference.Our mission at EDS Canada Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Welcome to Our 2024 Conference: Understanding EDS/HSD+ Symptomology, Diagnoses and Treatment The ILC Ehlers Danlos & Chronic Pain Foundation 2025-01-30 | Dr. Virginia McEwen & Dr. Roland Beaulieu introduce our November 2024 ILC EDS Conference: Understanding EDS/HSD+ Symptomology, Diagnoses and Treatment - A Guide for Primary Care Practitioners & Physician SpecialistsOur mission at EDS Canada Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Dysautonomia and Headache in Patients with HSD | Dr. Svetlana Blitshteyn, MD, Neurologist The ILC Ehlers Danlos & Chronic Pain Foundation 2024-10-29 | In this thorough presentation, Dr. Svetlana Blitshteyn, MD and neurologist, presents her research on dysautonomia and headache in patients with HSD.Presented at the November 2023 ILC Conference: The Lurking SymptomologyOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Q&A with Dr. Bluestein The ILC Ehlers Danlos & Chronic Pain Foundation 2024-10-29 | Dr. Linda Bluestein, MD, answers questions from our live viewers at our November 2023, The Lurking Symptomology conference. For better context, please review Dr. Bluestein's presentation on "Treating Symptomatic Joint Hypermobility." Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
An Integrative Approach to Treating Symptomatic Joint Hypermobility | Dr. Linda Bluestein, MD The ILC Ehlers Danlos & Chronic Pain Foundation 2024-10-29 | Dr. Linda Bluestein, MD, presents her knowledge on treating Symptomatic Joint Hypermobility. Presented at the November 2023 ILC Conference: The Lurking SymptomologyOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Q&A with Dr. Raj The ILC Ehlers Danlos & Chronic Pain Foundation 2024-10-29 | Dr. Satish R. Raj, answers questions from our live audience at our November 2023 Conference: The Lurking Symptomology. For better context, please watch his presentation on EDS and Dysautonomia. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
More Than Hypermobility: An interplay of Comorbidities | Dr. Brayden Yellman, MD, Rheumatologist The ILC Ehlers Danlos & Chronic Pain Foundation 2024-10-29 | In this detailed presentation, Dr. Brayden Yellman, MD and Rheumatologist, from the Bateman Horne Center, presents his research on Comorbidities in Hypermobility, EDS, and Mast Cell Activation Syndrome. Presented at the November 2023 ILC Conference: The Lurking SymptomologyOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Q&A with Dr. Yellman The ILC Ehlers Danlos & Chronic Pain Foundation 2024-10-29 | Dr. Brayden Yellman, MD and Rheumatologist, answers questions from our live audience from the November 2023 Conference: The Lurking Symptomology.For better context, please watch his presentation, "More than Hypermobility: An Interplay of Comorbidities." Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
HEDS / HSD: Consider the Comorbidities | Dr. Clair Francomano, MD, Clinical Geneticist The ILC Ehlers Danlos & Chronic Pain Foundation 2024-10-29 | Dr. Clair Francomano, MD & Clinical Geneticist, discusses the comorbidities in HEDS & HSD. Presented at the November 2023 ILC Conference: The Lurking SymptomologyOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
EDS and Dysautonomia | Dr. Satish R. Raj, MD, MSCI, FACC, FHRS The ILC Ehlers Danlos & Chronic Pain Foundation 2024-10-29 | Dr. Satish R. Raj, MD, MSCI, FACC, FHRS, presents his detailed research and data on EDS and Dysautonomia. Presented at the November 2023 ILC Conference: The Lurking SymptomologyOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Q&A with Dr. Blitshteyn The ILC Ehlers Danlos & Chronic Pain Foundation 2024-10-29 | Dr. Svetlana Blitshteyn, MD and Neurologist, answers questions from our live viewers at our November 2023 Conference: The Lurking Symptomology. For better context, please watch Dr. Blitshteyn's presentation on "Dysautonomia and Headache in Patients with HSD."Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Welcome to our 2023 Conference: The Lurking Symptomology The ILC Ehlers Danlos & Chronic Pain Foundation 2024-10-29 | Dr. Robyn Duffus introduces our November 2023 ILC Conference: The Lurking SymptomologyOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Through the Eyes of a Child Living with EDS (Ehlers-Danlos Syndrome) The ILC Ehlers Danlos & Chronic Pain Foundation 2024-05-15 | ...
Research Canada Shaping the Future of Healthcare with New Technologies, Devices &eHealth Innovations The ILC Ehlers Danlos & Chronic Pain Foundation 2024-05-13 | Virtual PHRC Event: Shaping the Future of Health Care with New Technologies, Devices and eHealth InnovationsWednesday, May 8, 2024Hosted by the Parliamentary Health Research Caucus, this virtual event showcased the transformative impact of technology in Canadianhealthcare, featuring presentations from 12 esteemed researchers in the field of eHealth.Sponsored by Innovative Medicines Canada, the ILC Charitable Foundation, Kids Brain Health Network, the Research Institute of the McGill University Health Centre, BD Canada, Lakehead University, the Provincial Health Services Authority, and Thunder Bay Regional Health Research Institute: rc-rc.ca/phrc-virtual-ehealth-event-may-8-202400:00:00 Opening Remarks - Alison Evans & Hon. Dr. Helena Jaczek00:05:46 Sponsors: Jacqueline Raposo from The ILC Charitable Foundation, Innovative Medicines Canada, Kids Brain Health Network00:19:09 Group 1: Drs. Siamak Arzanapour, Elina Birmingham, Philip Awadalla, Simon Drouin, Martin Ferguson-Pell & Alan Forster1:11:17 Group 2: Drs. Liam Kelly, Aislin Mushquash, Plinio Pelegrini Morita, Kiemute Oyibo, Tamara Vanderwal & Alain Moreau.
Welcome to our 2023 Conference: Fitting the Pieces Together & the 10% Rule The ILC Ehlers Danlos & Chronic Pain Foundation 2023-06-30 | Welcome to our June 2023 ILC Virtual Conference: Fitting the Pieces Together & the 10% Rule, introduced by Dr. Robyn Duffus, MD, FRCPC, ADMG Consulting, Paediatrician NOSM University. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Building your Care Toolkit with What is Known and Unknown About EDS & Chronic Pain | Tammy Stadt The ILC Ehlers Danlos & Chronic Pain Foundation 2023-06-30 | Tammy Stadt, EDS Patient & Board Director with The ILC Foundation, presents her knowledge on building a care toolkit with the knowns and unknowns of EDS & Chronic Pain. Presented at the June 2023 ILC Conference: Fitting the Pieces Together & the 10% RuleOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Graphic Pain Scales Barrier or Aids: A Historical Overview | Dr. Gabi Schaffzin, PhD The ILC Ehlers Danlos & Chronic Pain Foundation 2023-06-30 | Dr. Gabi Schaffzin, PhD, Assistant Professor at York University, presents his research on Graphic Pain Scales throughout their history.Presented at the June 2023 ILC Conference: Fitting the Pieces Together & the 10% RuleOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Establishing a Road Map to Overcome Barriers to EDS Care | Dr. Jordan Jones & Dr. William Black The ILC Ehlers Danlos & Chronic Pain Foundation 2023-06-30 | Dr. Jordan T. Jones, DO, MS, Associate Professor of Pediatrics, Division of Rheumatology, & Dr. William R. Black, PhD, Assistant Professor of Pediatrics, Division of Pediatrics at Children's Mercy Kansas City, present their research on Overcoming Barriers to Ehlers Danlos Syndrome. Presented at the June 2023 ILC Conference: Fitting the Pieces Together & the 10% RuleOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Q&A with Dr. Jones and Dr. Black | Establishing a Road Map to Overcome Barriers to EDS Care The ILC Ehlers Danlos & Chronic Pain Foundation 2023-06-30 | Join Dr. Jones and Dr. Black in answering questions from the 2023 ILC Conference: Fitting the Pieces Together & the 10% RuleOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Q&A with Tammy Stadt The ILC Ehlers Danlos & Chronic Pain Foundation 2023-06-30 | Join Tammy Stadt, EDS Patient & Board Director with The ILC Foundation, as she answers questions from her presentation: Building your Care Toolkit with What is Known and Unknown About EDS & Chronic PainPresented at the June 2023 ILC Conference: Fitting the Pieces Together & the 10% RuleOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Q&A with Dr. Ahmad Hasan The ILC Ehlers Danlos & Chronic Pain Foundation 2023-06-29 | Dr. Ahmad Hasan answers questions from the Women's Health Conference - Pain & Management of Weak Connective Tissue in EDSOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Pelvic Health Physiotherapy in EDS & HSD | Nelly Faghani, RPT The ILC Ehlers Danlos & Chronic Pain Foundation 2023-05-02 | Nelly Faghani presents: Physiotherapy in Ehlers-Danlos Syndromes & Hypermobility Spectrum DisordersPresented at the 2023 ILC Conference: Women's Health - Care & Management of Weak Connective Tissue in EDS.Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Hypermobile EDS During Pregnancy, Birth and Beyond | Dr. Sally Pezaro, PhD, MSc, FRCM, BA, PGCAPHE The ILC Ehlers Danlos & Chronic Pain Foundation 2023-05-02 | Dr. Sally Pezaro, PhD, MSc, FRCM, BA(Hons), PGCAPHE, FHEA, RM, presents her research on Hypermobile EDS During Pregnancy, Birth and Beyond. Presented at the 2023 ILC Conference: Women's Health - Care & Management of Weak Connective Tissue in EDS.Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
EDS & Womens Health, What We Know | Dr. Ahmad Hasan, Resident Physician at University of Toronto The ILC Ehlers Danlos & Chronic Pain Foundation 2023-05-02 | Dr. Ahmad Hasan, Resident Physician at the University of Toronto, presents his knowledge and research on EDS & Women's Health.Presented at the 2023 ILC Conference: Women's Health - Care & Management of Weak Connective Tissue in EDS.Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Welcome to our 2023 Conference: Womens Health - Care & Management of Weak Connective Tissue in EDS The ILC Ehlers Danlos & Chronic Pain Foundation 2023-05-02 | Jacqueline Raposo and Dr. Robyn Duffus introduce the 2023 Canadian Ehlers-Danlos Syndromes Conference: Women's Health - Care & Management of Weak Connective Tissue in EDS. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Challenges of Chronic Disease from a Patient and Healthcare Perspective | Dr. Bryan MacLeod, MD The ILC Ehlers Danlos & Chronic Pain Foundation 2022-11-14 | Dr. Bryan MacLeod speaks about the challenges of chronic diseases from a patient and healthcare perspective - recognizing the signs of burnout. Presented at the 9th Accredited ILC Conference: A Lifetime of Learning on Saturday, November 5th, 2022. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Q&A with Dr. Alain Moreau & Catherine Sones The ILC Ehlers Danlos & Chronic Pain Foundation 2022-11-14 | Dr. Alain Moreau and his patient Catherine Sones answer a few questions from the 2022 Canadian Ehlers Danlos Syndromes Conference.Presented at the 9th Accredited ILC Conference: A Lifetime of Learning on Saturday, November 5th, 2022. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Patient Presentation: Catherine Sones The ILC Ehlers Danlos & Chronic Pain Foundation 2022-11-14 | Catherine Sones discusses her health journey living with hEDS.Presented at the 9th Accredited ILC Conference: A Lifetime of Learning on Saturday, November 5th, 2022. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Patient Presentation: Lisa Kokanie The ILC Ehlers Danlos & Chronic Pain Foundation 2022-11-14 | Presented at the 9th Accredited ILC Conference: A Lifetime of Learning on Saturday, November 5th, 2022. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Advancing Myalgic Encephalomyelitis Research to Transform Healthcare | Dr. Alain Moreau, PhD The ILC Ehlers Danlos & Chronic Pain Foundation 2022-11-14 | Dr. Alain Moreau discusses how myalgic encephalomyelitis research can transform healthcare and presents the challenges and opportunities ahead.Presented at the 9th Accredited ILC Conference: A Lifetime of Learning on Saturday, November 5th, 2022. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Q&A with Dr. Virginia McEwen & Beckie Bilcowski The ILC Ehlers Danlos & Chronic Pain Foundation 2022-11-14 | Dr. Virginia McEwen and her patient Beckie Bilcowski answer a few questions from the 2022 Canadian Ehlers Danlos Syndromes Conference. Presented at the 9th Accredited ILC Conference: A Lifetime of Learning on Saturday, November 5th, 2022. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Q&A with Dr. Bryan MacLeod The ILC Ehlers Danlos & Chronic Pain Foundation 2022-11-14 | Presented at the 9th Accredited ILC Conference: A Lifetime of Learning on Saturday, November 5th, 2022. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Mast Cell Activation Syndrome - Pain and Neurological Manifestations | Dr. Virginia McEwen, MD, CCFP The ILC Ehlers Danlos & Chronic Pain Foundation 2022-11-14 | Dr. Virginia McEwen, MD, CFPC, Pain Medicine Consultant, presents her knowledge and insight on Mast Cell Activation Syndrome.Presented at the 9th Accredited ILC Conference: A Lifetime of Learning on Saturday, November 5th, 2022. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Patient Presentation: Beckie Bilcowski The ILC Ehlers Danlos & Chronic Pain Foundation 2022-11-14 | Beckie Bilcowski shares her health journey living with MCAS.Presented at the 9th Accredited ILC Conference: A Lifetime of Learning on Saturday, November 5th, 2022. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
Q&A with Dr. Norris & Dr. Gensemer The ILC Ehlers Danlos & Chronic Pain Foundation 2022-11-14 | Dr. Norris & Dr. Gensemer answer a few questions from the 2022 Canadian Ehlers Danlos Syndromes Conference.Presented at the 9th Accredited ILC Conference: A Lifetime of Learning on Saturday, November 5th, 2022. Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org
EDS Campaign for Specialized Healthcare The ILC Ehlers Danlos & Chronic Pain Foundation 2022-01-07 | All Ontarian's and Canadians deserve an efficient diagnosis and pain management process, leading experts here at home and the necessary investments to provide the full spectrum of support they require for current and future care. #prioritizepain
The ILC Annual Webinar 2021:CBD Pain Management in EDS/HSD The ILC Ehlers Danlos & Chronic Pain Foundation 2021-09-24 | The ILC Annual Collaborative Webinar on Tuesday August 31st, was a multidisciplinary event hosted with Apollo Cannabis Clinics.
Clair Francomano MD | Ehlers Danlos Syndrome: Genetics and Multi-Disciplinary Management | 2016 The ILC Ehlers Danlos & Chronic Pain Foundation 2021-04-21 | Presented at the 2016 Annual ILC Ehlers Danlos ConferenceOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge sharing resources, awareness, education, peer support, and research to find cures.
Scott Walsh MD PhD FRCPC | Ehlers Danlos Syndromes Dermatologic Features and Issues | 2016 The ILC Ehlers Danlos & Chronic Pain Foundation 2021-04-21 | Presented at the 2016 Annual ILC Ehlers Danlos ConferenceOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge sharing resources, awareness, education, peer support, and research to find cures.
Christina Pridmore R.Kin., D.O.M.P | A Manual Therapy & Exercise Approach to the Management of EDS The ILC Ehlers Danlos & Chronic Pain Foundation 2021-04-21 | Presented at the 2016 Annual ILC Ehlers Danlos ConferenceOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge sharing resources, awareness, education, peer support, and research to find cures.
Myles Koby DDS MD | Cervical Spine Instability Connective Tissue Disease Imaging Evaluation | 2016 The ILC Ehlers Danlos & Chronic Pain Foundation 2021-04-21 | Presented at the 2016 Annual ILC Ehlers Danlos ConferenceOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge sharing resources, awareness, education, peer support, and research to find cures.
Roberto Mendoza | EDS Clinical Service Update | 2016 The ILC Ehlers Danlos & Chronic Pain Foundation 2021-04-21 | Presented at the 2016 Annual ILC Ehlers Danlos ConferenceOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge sharing resources, awareness, education, peer support, and research to find cures.
James Rutka MD, PhD | Neurological Manifestations of EDS | 2016 The ILC Ehlers Danlos & Chronic Pain Foundation 2021-04-21 | Presented at the 2016 Annual ILC Ehlers Danlos ConferenceOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge sharing resources, awareness, education, peer support, and research to find cures.
Fraser Henderson Neurological Manifestations of Hereditary Hypermobility Connective Tissue Disorders The ILC Ehlers Danlos & Chronic Pain Foundation 2021-04-21 | Presented at the 2016 Annual ILC Ehlers Danlos ConferenceOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge sharing resources, awareness, education, peer support, and research to find cures.
Louis Liu MD, PhD, FRCPC | Gastrointestinal Manifestations in Patients with Ehlers Danlos Syndrome The ILC Ehlers Danlos & Chronic Pain Foundation 2021-04-21 | Presented at the 2016 Annual ILC Ehlers Danlos ConferenceOur mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge sharing resources, awareness, education, peer support, and research to find cures.
