All types

In March 2017 some significant changes were made to the way the Ehlers-Danlos syndromes are classified and diagnosed. Thirteen types of EDS are now recognised, most of which are very rare. The gene mutations causing the conditions have been identified, and can be tested for, in all types except for the most common type, hypermobile EDS.

Kyphoscoliotic Ehlers-Danlos syndrome

Author
Jessica Bowen & Judy Tocher, Genetic Counsellors, EDS National Diagnostic Service, Sheffield Children's Hospital

Summary

An overview of kyphoscoliotic Ehlers-Danlos syndrome - its symptoms, diagnosis and cause explained. Written by genetic counsellors from the UK's only clinical genetics service specialising in the Ehlers-Danlos syndromes.

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Dermatosparaxis Ehlers-Danlos syndrome

Author
Jessica Bowen & Judy Tocher, Genetic Counsellors, EDS National Diagnostic Service, Sheffield Children’s Hospital

Summary

A look at one of the very rare types of EDS.

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Video: The genetics behind connective tissue

Presenter
Dr Clair Francomano, Clinical Geneticist and Director of Adult Genetics, Harvey Institute of Human Genetics, Greater Baltimore Medical Center, USA

Summary

The genetics behind connective tissue, heritable disorders of connective tissue and the different types of EDS.

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Video: EDS – The National Diagnostic Service and Specialist Clinic

Presenter
Dr Glenda Sobey, Consultant and Lead Clinician, EDS National Diagnostic Service, Sheffield Children's Hospital

Summary

The work of the NHS specialist service for atypical and complex cases of EDS (rare types).

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Video: The EDS diagnostic services and rarer types of EDS

Presenter
Dr Anthony Vandersteen, Clinical Geneticist, EDS National Diagnostic Service, Northwick Park and St Mark’s Hospitals, Harrow

Summary

The work of the EDS National Diagnostic Service in diagnosing rare types of EDS.

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Video: EDS in 2012

Presenter
Dr Clair Francomano, Clinical Geneticist and Director of Adult Genetics, Harvey Institute of Human Genetics, Greater Baltimore Medical Center, USA

Summary

Dr Francomano discusses what we know and what we don't know about EDS in 2012.

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Video: EDS – myths and facts

Presenter
Dr Brad Tinkle, Clinical Geneticist and Division Head of Clinical Genetics, Advocate Children's Hospital, Chicagoland, USA

Summary

Myths and facts surrounding EDS.

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Video: EDS – past, present and future

Presenter
Professor Rodney Grahame, Consultant Rheumatologist, The Hypermobility Unit, Hospital of St John and St Elizabeth, London

Summary

The history of the Ehlers-Danlos syndromes.

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Video: Update from the EDS National Diagnostic Service

Presenter
Dr Glenda Sobey, Consultant and Lead Clinician, EDS National Diagnostic Service, Sheffield Children's Hospital and Rebecca Pollitt, Lead Scientist, Genetics Team, Sheffield Children's Hospital

Summary

An update from the clinic dealing with complex cases and rare types of EDS.

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Video: Ehlers-Danlos syndrome – a personal historical perspective

Presenter
Professor Francis Michael Pope, Consultant in Charge, NHS National Commissioning Group Complex EDS Service, Northwick Park Hospital, Harrow

Summary

The history of the Ehlers-Danlos syndromes.

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What is EDS?

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