Vascular EDS

Vascular Ehlers Danlos syndrome (vEDS) is a rare disorder, estimated to affect between 1 in 50,000 and 1 in 200,000 people. It is caused by a gene mutation affecting a major protein, which causes weakness in vessel walls and hollow organs. The condition is characterized by aneurysms (a bulge in an artery), rupture of the bowel, and rupture of the womb during pregnancy. Managing and monitoring the condition improves outlook and requires specialists from different disciplines.

Vascular Ehlers-Danlos syndrome

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

Summary

An introduction to living with vascular Ehlers-Danlos syndrome (vEDS) for people newly diagnosed with the condition and their families. Written by genetic counsellors from the UK's only clinical genetics service specialising in the Ehlers-Danlos syndromes.

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Video: Arterial aneurysm and dissection in vascular EDS

Presenter
Professor Nigel Wheeldon, Lead Consultant Cardiologist, Regional Inherited Cardiac Conditions Service, Northern General Hospital, Sheffield

Summary

The investigation and management of arterial aneurysms and dissections in vascular EDS.

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Video: Vascular EDS Medical Emergency Card

Presenter
Claire Green, Genetic Counsellor

Summary

The importance of having a Medical Emergency Card if you are diagnosed with vascular EDS.

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Video: Living with vascular EDS – a parent’s perspective

Presenter
Victoria Whatton

Summary

Victoria talks about her own experience of having a child with vEDS.

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Video: Molecular genetics and vascular EDS

Presenter
Duncan Baker, Head of Pharmacogenetics, Sheffield Diagnostic Genetics Service, Sheffield Children’s Hospital

Summary

The work of the Sheffield Molecular Genetics Laboratory and how they confirm a diagnosis of vEDS.

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Video: Medic Alert

Presenter
Sylvia Ehlers, Registered Nurse, MedicAlert UK

Summary

MedicAlert UK's presentation about the personalised jewellery recommended if you have vascular EDS to assist paramedics and other healthcare professionals in the event of an emergency.

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Video: Vascular EDS – a patient’s perspective

Presenter
Isabella Marin

Summary

Isabella talks about living positively with vEDS.

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Video: Research into vascular EDS

Presenter
Dr Neeti Ghali & Dr Fleur van Dijk, Consultant Clinical Geneticists, EDS National Diagnostic Service, Northwick Park and St Mark’s Hospitals, Harrow

Summary

Medical research, research in genetics/genomics and the latest research into vEDS.

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Video: Overview of vascular EDS

Presenter
Dr Diana Johnson, Consultant Clinical Geneticist, EDS National Diagnostic Service, Sheffield Children's Hospital

Summary

An up-to-date review of vEDS, post-2017 EDS International Classification.

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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: A personal story about a vEDS patient’s travels – Part 1

Presenter
Joanne Teague, author and patient

Summary

Joanne talks about her book 'See You In September', where she tells of her six months travelling around Europe following her diagnosis of vascular 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: A personal story about a vEDS patient’s travels – Part 2

Presenter
Joanne Teague, author and patient

Summary

Joanne talks about her book 'See You In September', where she tells of her six months travelling around Europe following her diagnosis of vascular EDS.

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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: 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: Vascular EDS, an overview

Presenter
Dr Diana Johnson, Consultant Clinical Geneticist, EDS National Diagnostic Service, Sheffield Children's Hospital

Summary

A general summary of vEDS.

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Link to Annabelle’s Challenge

Summary

Annabelle's Challenge is a registered charity raising awareness of vascular Ehlers-Danlos syndrome to help aid early diagnosis and prevent misdiagnosis of this life-threatening genetic condition. They provide help, support and advice to families affected by vascular EDS.

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What is EDS?

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