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.
Video: Antenatal Considerations and vEDS
Presenter
Katherine von Klemperer, Barts Heart Centre
Summary
A talk on vascular EDS and pregnancy
Genetic testing for rare types of EDS
Author
Juliette Harris, MS.c, Ph.D, Specialist Genetic Counsellor, Ehlers-Danlos Diagnostic Service London
Summary
Juliette Harris a specialist genetic counsellor from the Ehlers-Danlos Diagnostic Service, London
Video: Dental Management and vEDS
Presenter
James Scott BDS MSC P
Summary
James Scott talks about dental issues and care relating to vascular EDS
Video: Management of vascular EDS
Presenter
Dr Glenda Sobey
Summary
Glenda Sobey talks about her experience of managing vascular EDS in the NHS
Care and emergency advice from Annabelle’s Challenge
Author
Jared Griffin, founder and CEO of Annabelle's Challenge
Summary
Founder and CEO of Annabelle's Challenge gives practical advice on care and emergency procedures for vEDS patients
Video: psychosocial impact of living with Vascular EDS
Presenter
Leanne Barrett, Genetic counsellor
Summary
Leanne talks about her research results into the psychosocial impact of living with Vascular EDS
Video: keeping mentally healthy with vEDS
Presenter
Peter Abbot
Summary
A talk wellbeing and how you can support your mental health, when you have a vEDS diagnosis
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.
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.
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.
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.
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.
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.
Video: Vascular EDS – a patient’s perspective
Presenter
Isabella Marin
Summary
Isabella talks about living positively with vEDS.
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.
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.
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.
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.
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).
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.
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.
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.
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.
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.