EDS ECHO Summit Series: Pediatric & Adolescent Concerns in EDS & HSD – Event Recordings

Watch the presentations from the EDS ECHO Summit Series: Pediatric & Adolescent Concerns in EDS & HSD event

Welcome to Session 1 – Donna Sullivan

Donna Sullivan is a passionate writer who uses her experience in media and communications to creatively raise awareness of the needs of children living with Ehlers Danlos Syndrome and complex pain conditions. 

As a board member for The Coalition Against Pediatric Pain, (TCAPP.org) Donna has spent the last 9 years supporting children and families. She is also The Director of Patient Advocacy for Pathways To Trust, A US based non-profit that brings patients and medical students together to educate about bias in rare disease. 

An outspoken voice for the rising epidemic of psychological misdiagnosis in rare and undiagnosed people, Donna is also the Consulting Producer for “Complicated,” a film in production with Open Eye Pictures.

Donna has three children diagnosed with hypermobility, Ehlers-Danlos syndrome, POTS, MCAS and Complex Regional Pain Syndrome. She also serves on the Board of Directors for Merlin’s Kids, a NJ based non-profit that trains and places service dogs. 

Pediatric Joint Hypermobility: 2022 Diagnostic Framework – Dr. Louise Tofts

This presentation was shared live at the event and will not be shared further.

Louise is an accredited rehabilitation physician and paediatrician holding Australian fellowships in both specialties and a Masters in Sports Medicine from The University of New South Wales. Louise currently practices at Kids Rehab the Children’s Hospital at Westmead and Narrabeen Sports Medicine Centre. She trained and practiced in London, England at St Bartholomews Hospital, The Royal London Hospital and Great Ormond Street Hospital for Sick Children. She has expertise in hypermobility, persistent musculoskeletal pain, fatigue, difficulty learning motor skills, congenital musculoskeletal conditions, athletes with a physical disability and exercise and rehabilitation programs for children following injury or illness. She is an active clinician researcher in the areas above.  

Louise is currently the Chair of the paediatric working group of the International Consortium (IC) on EDS and HSD.  

Comorbidities in Pediatric Joint Hypermobility – Dr. Verity Pacey

Verity is an Associate Professor and Head of the Department of Health Sciences within the Faculty of Medicine, Health & Human Sciences, Macquarie University. She has 20 years of experience as a clinical physiotherapist and supervises students and clinicians undertaking higher degree research in various aspects of paediatric physiotherapy practice. Verity is considered an international leader in the physiotherapy management of individuals with hypermobility and connective tissue disorders, and is an active member of the Short Statured People’s Association of Australia Health Professional Advisory Board and Paediatric and Allied Health working groups of the International Consortium on EDS and HSD. She is an invited speaker at both national and international level within her area of expertise: rare and complex conditions in paediatrics, focusing on physical activity, function and quality of life. 

Diagnosis for the Child Who May Have Hypermobile EDS (hEDS) – Dr. Ellen Elias

I am a pediatric specialist board certified in Clinical Genetics and Neurodevelopmental Disabilities. I direct the Special Care Clinic and the Center for Excellence for EDS at Children’s Hospital Colorado. I am an active member of the pediatric working group of the International Consortium on EDS and HSD, supported by the Ehlers-Danlos Society. We are developing a pediatric approach and classification system for younger patients. I am participating in writing journal articles with this group, as well as speaking at and leading sessions at EDS conferences. I have since delivered invited talks on EDS at national and international meetings. 

Q&A Session

Welcome to Session 2 – Dr. Alan Hakim

I am a Rheumatologist based in London, UK. Graduating from Cambridge University, I trained at Addenbrooke’s, Cambridge, and UCLH, London, and was a Clinical Fellow at St Thomas’ Hospital, and Senior Lecturer at Bart’s Health, London. I am a Fellow of the Royal College of Physicians, UK; Assoc. Prof. in Medicine, Penn State, USA; and an Hon. Consultant at UCLH. Experienced in hospital Director, Executive and Commissioning Board leadership, I have a breadth of skills in project management and health care delivery. With over 100 papers in Rheumatology and Medical Education, I am an experienced clinical academic, and have been guest editor at the Am J Med Genet and edited 6 books. I work closely with the Ehlers-Danlos Society and International Consortium (IC) on Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders, am the Registry & Education Director and member of the Medical & Scientific Board at the Society and sit on the International Consortium on EDS and HSD Steering Committee as the hEDS/HSD working Group Chair. 

Assessment of Fractures, Bruising, and Bleeding in Infants – Dr. Sarah Schwartz

Dr. Schwartz is a paediatrician 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 Paediatric EDS Clinic in 2017 and continues to care for patients as the Clinic Paediatrician. She is the Medical Director of Paediatric Medicine Clinics and the Program Director of Paediatric Medicine Fellowships at the University of Toronto and Hospital for Sick Children. 

The Genetic Evaluation for Pediatric Patients Presenting With Fractures and Bleeding – Dr. Ellen Elias

I am a pediatric specialist board certified in Clinical Genetics and Neurodevelopmental Disabilities. I direct the Special Care Clinic and the Center for Excellence for EDS at Children’s Hospital Colorado. I am an active member of the pediatric working group of the International Consortium on EDS and HSD, supported by the Ehlers-Danlos Society. We are developing a pediatric approach and classification system for younger patients. I am participating in writing journal articles with this group, as well as speaking at and leading sessions at EDS conferences. I have since delivered invited talks on EDS at national and international meetings. 

The Scientific Evidence on Fractures and Bleeding in Pediatric Hypermobility and EDS – Dr. Louise Tofts

This presentation was shared live at the event and will not be shared further.

Louise is an accredited rehabilitation physician and paediatrician holding Australian fellowships in both specialties and a Masters in Sports Medicine from The University of New South Wales. Louise currently practices at Kids Rehab the Children’s Hospital at Westmead and Narrabeen Sports Medicine Centre. She trained and practiced in London, England at St Bartholomews Hospital, The Royal London Hospital and Great Ormond Street Hospital for Sick Children. She has expertise in hypermobility, persistent musculoskeletal pain, fatigue, difficulty learning motor skills, congenital musculoskeletal conditions, athletes with a physical disability and exercise and rehabilitation programs for children following injury or illness. She is an active clinician researcher in the areas above.  

Louise is currently the Chair of the paediatric working group of the International Consortium (IC) on EDS and HSD.  

Q&A Session

Welcome to Session 3 – Donna Sullivan

Donna Sullivan is a passionate writer who uses her experience in media and communications to creatively raise awareness of the needs of children living with Ehlers-Danlos syndrome and complex pain conditions. 

As a board member for The Coalition Against Pediatric Pain, (TCAPP.org) Donna has spent the last 9 years supporting children and families. She is also The Director of Patient Advocacy for Pathways To Trust, A US based non-profit that brings patients and medical students together to educate about bias in rare disease. 

An outspoken voice for the rising epidemic of psychological misdiagnosis in rare and undiagnosed people, Donna is also the Consulting Producer for “Complicated,” a film in production with Open Eye Pictures.  

Donna has three children diagnosed with hypermobility, Ehlers-Danlos syndrome, POTS, MCAS and Complex Regional Pain Syndrome. She also serves on the Board of Directors for Merlin’s Kids, a NJ based non-profit that trains and places service dogs. 

Common Themes Evident in the UK in Relation to Fabricated or Induced Illness (FII) – 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. 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 and presented at the Arizona Global Learning Conference. 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. 

What to Expect When You Are Suspected: Navigating the Unexpected Waters of False Allegations – Rana Tyson

Rana Tyson is a Registered Nurse, certified in Inpatient Obstetrics, with over 20 years experience as a labor and delivery nurse in a large metropolitan hospital in Dallas, Texas, USA. She is married and a mother to three daughters and is a co-founder of Fractured Families, Inc., a non-profit organization dedicated to raising awareness, protecting and advocating for families falsely accused of child abuse. Her family faced false accusations of abuse in 2010 when their 4 week old twin daughters presented with unexplained metaphyseal fractures in their legs. The children were removed from their parents’ care for 5 months and were eventually returned when it was proven the injuries were not inflicted, but rather from a medical cause. Rana has classical EDS and her husband and children have the COL12A1 mutation for myopathic EDS. Rana is a participant in the EDS AHEAD Coalition. 

Practical Advice for Parents and Carers Regarding Avoiding False Allegations of Fabricated or Induced Illness (FII) or Over-Medicalization – 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. 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 and presented at the Arizona Global Learning Conference. 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. 

Q&A Session

Welcome to Session 4 – Dr. Alan Hakim

I am a Rheumatologist based in London, UK. Graduating from Cambridge University, I trained at Addenbrooke’s, Cambridge, and UCLH, London, and was a Clinical Fellow at St Thomas’ Hospital, and Senior Lecturer at Bart’s Health, London. I am a Fellow of the Royal College of Physicians, UK; Assoc. Prof. in Medicine, Penn State, USA; and an Hon. Consultant at UCLH. Experienced in hospital Director, Executive and Commissioning Board leadership, I have a breadth of skills in project management and health care delivery. With over 100 papers in Rheumatology and Medical Education, I am an experienced clinical academic, and have been guest editor at the Am J Med Genet and edited 6 books. I work closely with the Ehlers-Danlos Society and International Consortium (IC) on Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders, am the Registry & Education Director and member of the Medical & Scientific Board at the Society and sit on the International Consortium on EDS and HSD Steering Committee as the hEDS/HSD working Group Chair. 

Biases in Healthcare: An Overview for Individuals With EDS/HSD and Co-morbid Disorders – Dr. Anne Maitland

Anne Maitland received a Bachelor of Science, in the biology, from Yale University, and then an MD, PHD from the University of Pennsylvania. She then completed post graduate studies in Internal Medicine and Clinical Immunology at Brigham and Women’s Hospital, in Boston, and the Icahn School of Medicine at Mt Sinai, in New York. She is an Assistant Professor at Mt Sinai, in the Department of Medicine- Allergy/Immunology division and joined Dr. Paolo Bolognese at Mt Sinai-South Nassau Community Hospital, to form a multi-discipline EDS center. Dr. Maitland also provides telehealth consultations in her private practice. Dr. Maitland is a member of Immunology faculty of the National Medical Association and serves as chair of the Mast Cell Disorders workgroups for American Academy and the EDS International Consortium. Recent publications focused on immunological defects in EDS patients, including mast cell activation disease. 

The Long and Winding Road… Reducing Unconscious Bias – Dr. Philip Bull

I am a Consultant Rheumatologist with a special interest in Hypermobility in adults and adolescents, working at the One Hospital, Ashford Kent. I hold an honorary Senior Lecturer post with Kings College Medical school. I am Lead Medical Adviser to the hypermobility syndromes association and chair the British Society for Rheumatology (BSR) special interest Group for hypermobility. I am currently leading the BSR e learning module for Hypermobility syndromes.  

Reflections on Unconscious Bias – Dr. Alan Hakim

I am a Rheumatologist based in London, UK. Graduating from Cambridge University, I trained at Addenbrooke’s, Cambridge, and UCLH, London, and was a Clinical Fellow at St Thomas’ Hospital, and Senior Lecturer at Bart’s Health, London. I am a Fellow of the Royal College of Physicians, UK; Assoc. Prof. in Medicine, Penn State, USA; and an Hon. Consultant at UCLH. Experienced in hospital Director, Executive and Commissioning Board leadership, I have a breadth of skills in project management and health care delivery. With over 100 papers in Rheumatology and Medical Education, I am an experienced clinical academic, and have been guest editor at the Am J Med Genet and edited 6 books. I work closely with the Ehlers-Danlos Society and International Consortium (IC) on Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders, am the Registry & Education Director and member of the Medical & Scientific Board at the Society and sit on the International Consortium on EDS and HSD Steering Committee as the hEDS/HSD working Group Chair. 

Panel Discussion

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