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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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/

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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.

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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.

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Link to Brain & Spine Foundation

Summary

The Brain & Spine Foundation provides expert support to people affected by any neurological condition.

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What is EDS?

Information sheets, how to get a diagnosis, advice for medical profesisonals......