SearchVascular 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.
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: Antenatal Considerations and vEDS
Presenter
Katherine von Klemperer, Barts Heart Centre
Summary
A talk on vascular EDS and pregnancy
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
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
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
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.
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.