Community Day

Watch the presentations from the Community Day of our EDS ECHO Summit Series: Neurological Complications event

Introduction to Session 1 – Dr. Manjit Matharu

Dr. Manjit Matharu is an Associate Professor at UCL Queen Square Institute of Neurology and Honorary Consultant Neurologist at The National Hospital for Neurology and Neurosurgery, London, UK. He is the Clinical and Academic Lead of the Headache and Facial Pain Group at The National Hospital for Neurology and Neurosurgery and UCL Queen Square Institute of Neurology, respectively.

Management of Headache and Migraine – Dr. Salwa Kamourieh

Dr. Salwa Kamourieh is a consultant neurologist at The National Hospital for Neurology and Neurosurgery, Queen square, London, UK. Dr. Kamourieh trained at Imperial College London and completed her general medical training in Southwest London leading up to obtaining the MRCP in 2010. She subsequently obtained a PhD at Imperial College London and completed her residency in Neurology at Imperial College NHS trust. During her training she developed an interest in the management of headache disorders and took up her consultant post in 2020. 

Dr. Kamourieh’s specialist interests focus on the management of primary refractory headache disorders (chronic migraine, vestibular migraine and the trigeminal autonomic cephalagias, CSF Pressure dysregulation), with specific interest in neurostimulation for intractable headache. Dr. Kamourieh has authored a number of scientific papers and contributed to book chapters. She has also presented at a number of national medical conferences and teaching courses.

What is Orthostatic Headache – Dr. Manjit Matharu

Dr. Manjit Matharu is an Associate Professor at UCL Queen Square Institute of Neurology and Honorary Consultant Neurologist at The National Hospital for Neurology and Neurosurgery, London, UK. He is the Clinical and Academic Lead of the Headache and Facial Pain Group at The National Hospital for Neurology and Neurosurgery and UCL Queen Square Institute of Neurology, respectively.

Headache Q&A Session

Introduction to Session 2 – Dr. Fraser Henderson

Dr. Henderson entered private practice in Chevy Chase, Maryland, as Director of Neurosurgery at Doctors Hospital and Director of the Chiari Center of Excellence, where he is focused on the development of the understanding and treatment of deformity induced injury to the brainstem and spinal cord in Chiari Malformation and Ehlers Danlos Syndrome. He is inventor of 11 devices and concepts relating to disorders of the brainstem and spinal cord, has published over 50 peer reviewed articles and book chapters, and given over 140 invited lectures with a focus on craniocervical disorders, Chiari malformation, cancer, radiosurgery and unusual problems of the spine.

A Physicians Perspective on Cranio-cervical Instability – 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.

Indications for Surgical Referral and Surgical Outcomes – Dr. Fraser Henderson

Dr. Henderson entered private practice in Chevy Chase, Maryland, as Director of Neurosurgery at Doctors Hospital and Director of the Chiari Center of Excellence, where he is focused on the development of the understanding and treatment of deformity induced injury to the brainstem and spinal cord in Chiari Malformation and Ehlers Danlos Syndrome. He is inventor of 11 devices and concepts relating to disorders of the brainstem and spinal cord, has published over 50 peer reviewed articles and book chapters, and given over 140 invited lectures with a focus on craniocervical disorders, Chiari malformation, cancer, radiosurgery and unusual problems of the spine.

Community Voice – Gricelda Rodriguez

My name is Gricelda, I am 29 years old and I was diagnosed with Hypermobile Ehlers-Danlos Syndrome August 2020, among other things. After one of the most difficult years in my life, I am here trying to share my experience with the hopes that awareness is spread about the complications of this condition.

Cranio-cervical Junction and Cervical Spine Q&A

Introduction to Session 3 – Dr. Petra Klinge

Dr. Klinge serves as an internationally renowned clinician for diagnosing and neurosurgical treatment of patients with CSF disorders working on the unifying concept of cognitive problems related pathology in Hydrocephalus of aging and pediatric patients. Her practice also includes patients with associated developmental Cerebrospinal fluid disorders, such as spina bifida, Chiari malformation, tethered cord, patients with connective tissue disorders and associated spinal fluid disorders including syringomyelia and occult tethered cord syndrome including in-vivo diagnostics to approach Chiari and Cognition and it’s associated CSF pathology. Dr. Klinge is also currently appointed by the National Academy of Sciences in a committee to establish disability criteria for the neurological conditions in patients with Ehlers-Danlos syndrome and Marfan Syndrome. 

How Your Physical Therapist Can Help You Manage Lumbar Instability – Dr. Leslie Russek

Dr. Russek is Professor Emeritus teaching musculoskeletal physical therapy in the Clarkson University Doctor of Physical Therapy program. She is an Orthopaedic Certified Specialist physical therapist with 30 years of clinical experience with 25 years specializing in hypermobile Ehlers-Danlos Syndrome. Research and clinical interests include hypermobile EDS, fibromyalgia, headaches and chronic pain. Dr. Russek presents nationally on HSD/hEDS, headaches, and chronic pain management. She runs an HSD support group and regularly presents to community groups on HSD. She facilitates the Allied Health Professionals ECHO Telementoring series for EDS in North America, serves on the International Consortium of Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders, and the National Academy of Sciences, Engineering and Medicine Committee on Selected Heritable Connective Tissue Disorders and Disability.

Symptoms and Management of Tethered Cord – Dr. Petra Klinge

 

Dr. Klinge serves as an internationally renowned clinician for diagnosing and neurosurgical treatment of patients with CSF disorders working on the unifying concept of cognitive problems related pathology in Hydrocephalus of aging and pediatric patients. Her practice also includes patients with associated developmental Cerebrospinal fluid disorders, such as spina bifida, Chiari malformation, tethered cord, patients with connective tissue disorders and associated spinal fluid disorders including syringomyelia and occult tethered cord syndrome including in-vivo diagnostics to approach Chiari and Cognition and it’s associated CSF pathology. Dr. Klinge is also currently appointed by the National Academy of Sciences in a committee to establish disability criteria for the neurological conditions in patients with Ehlers-Danlos syndrome and Marfan Syndrome. 

Community Voice – Julianna Spose

Julianna Spose, an individual with hEDS and multiple co-morbidities, graduated from Wake Forest University with her BA ’17, majoring in Religious Studies and Elementary Education and MEd ’18. She is a passionate educator who worked, as her health would allow, part-time in different classroom settings and as a Social Emotional Behavior Specialist for a period of time upon graduating. Though mostly healthy during her childhood and teenage years, her health took an abrupt turn in 2016 and has continued to decline. Julianna was diagnosed with Craniocervical Instability, Tethered Cord Syndrome, and a Cerebrospinal Fluid Leak, and underwent three surgeries to address these in the winter of 2020. Julianna is devoted to regaining as much health as possible so that she can hopefully resume her career in education. Recently married, she currently lives with her new husband in Charlotte, NC.

Lumbosacral Disease Q&A Session

Introduction to Session 4 – 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.

Management of Cardiovascular Autonomic Dysfunction – Dr. Valeria Iodice

Dr. Iodice is a Consultant Neurologist with a longstanding clinical and research interest in Autonomic Neurology, gained in three worldwide autonomic centres; Mayo Clinic, Rochester USA; Imperial College London and National Hospital for Neurology and Neurosurgery, London, UK. She is currently the Academic and Clinical lead of the Autonomic Centre at the National Hospital for Neurology and Neurosurgery at Queen Square. Dr. Iodice is also Honorary Associate Professor in Neurology at UCL, Institute of Neurology. 

Assessment and Management of Sensory Neuropathy – Dr. David Saperstein

Dr. Saperstein is a graduate of Boston University School of Medicine. He completed a Neurology residency at Wilford Hall USAF Medical Center in San Antonio, Texas, followed by a Neuromuscular Disease/Clinical Neurophysiology fellowship at the University of Texas Southwestern Medical Center in Dallas. He is board-certified in Neurology, Neuromuscular Medicine, Electrodiagnostic Medicine, and Clinical Neuromuscular Pathology. Dr. Saperstein is the director of the Center for Complex Neurology, EDS & POTS in Phoenix, AZ. His practice focuses on the diagnosis and management of EDS as well as autonomic and neuromuscular disorders. 

Dr. Saperstein is a Clinical Associate Professor of Neurology at the University of Arizona College of Medicine. He is well-known for his research and publications regarding immune-mediated and small fiber neuropathies. Dr. Saperstein’s clinical and research interests include a broad array of neuromuscular and autonomic disorders.

Sensory and Autonomic Neuropathy Q&A Session

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