Brain and spine
There are many neurological and spinal problems which have been observed to be more common in EDS, examples include migraine, early disc degeneration, Chiari 1 malformation, craniocervical instability, motor delay, and curvature of the spine. Musculoskeletal pain can start early and be chronic. Weakness, fatigue, and mild impairment of mobility and daily activities may also occur.
Autonomic dysfunction
Author
Dr Alan Hakim, Consultant Rheumatologist & Professor Rodney Grahame, Consultant Rheumatologist, The Hypermobility Unit, Hospital of St John and St Elizabeth, London
Summary
An overview of postural tachycardia syndrome (PoTS), an abnormality in the way the involuntary part of the nervous system functions - its symptoms, the diagnostic tests available and your treatment options.
Managing fatigue, sleeping problems and brain fog
Author
Jenny Morrison, Neurogenetics Research Nurse, University College London Hospital
Summary
A guide to the chronic fatigue and sleep issues that are so common in EDS.
Video: Managing PoTS
Presenter
Dr Lesley Kavi, GP and Chairperson, PoTS UK
Summary
A discussion of postural tachycardia syndrome (PoTS) with tips on how it can be managed.
Video: The neuropathology of lax ligaments – the spine, neck and head in EDS
Presenter
Dr Fraser Henderson, Director of Neurosurgery, Doctors Community Hospital, Maryland, USA
Summary
An overview of some of the neurological problems that can occur in EDS.
Video: A patient’s perspective on Chiari, CCI and TMJ
Presenter
Sarah Fatherley
Summary
Sarah gives an insight into her life as a patient and activist.
Video: The jaw and headaches in EDS
Presenter
Dr John Mitakides, Founder of The TMJ Treatment Center, Beavercreek, Ohio, USA
Summary
Temporomandibular joint (TMJ) disorders and referral headaches in EDS.
Video: The postural tachycardia syndrome – PoTS and progress
Presenter
Professor Christopher Mathias, Professor of Neurovascular Medicine, UCL Institute of Neurology, London
Summary
Our current understanding of PoTS, a dysfunction of the autonomic (involuntary) nervous system.
Video: Autonomic issues and EDS
Presenter
Dr David Low, Clinical Research Lead, Autonomic and Neurovascular Medicine Unit, Imperial College London
Summary
An overview of autonomic dysfunction and postural tachycardia syndrome (PoTS) in EDS.
Webinar: Temporomandibular joint and cervico-cranial instability in the EDS patient
Presenter
Dr John Mitakides, Founder of The TMJ Treatment Center, Beavercreek, Ohio, USA
Summary
Lara Bloom, former COO of EDS UK, interviews Dr Mitakides about TMJ disorders and CCI in EDS.
Video: Chiari and cranial instability in EDS
Presenter
Dr Clair Francomano, Clinical Geneticist and Director of Adult Genetics, Harvey Institute of Human Genetics, Greater Baltimore Medical Center, USA
Summary
Chiari 1 malformation and cervicocranial instability in EDS.
Teens and autonomic dysfunction
Author
Mayo Clinic
Summary
This booklet produced by the Mayo Clinic is aimed at teenagers but useful for anyone suffering with autonomic dysfunction. It explains what postural tachycardia syndrome is and gives tips on how you can feel better.
For more information surrounding this booklet contact Mayo Clinic http://www.mayoclinic.org/
Link to PoTS UK
Summary
PoTS UK is a registered charity which supports and educates people with postural tachycardia syndrome and medical professionals about this little-known, debilitating condition.
Link to STARS
Summary
The charity STARS (Syncope Trust And Reflex anoxic Seizures) supports anyone with unexplained loss of consciousness, helping them to receive the correct diagnosis and appropriate care.
Link to Brain & Spine Foundation
Summary
The Brain & Spine Foundation provides expert support to people affected by any neurological condition.