Health-Related Anxiety VEDS Study
Health-related anxiety and quality of life in individuals with Vascular Ehlers-Danlos Syndrome and their families
Study Title
Health-related anxiety and quality of life in individuals with Vascular Ehlers-Danlos Syndrome and their families.
Objective
Living with vEDS, or having a family member affected by it can lead to significant emotional and psychological challenges.
Previous research has suggested that individuals with rare and chronic conditions may experience heightened levels of health-related anxiety and reduced quality of life, however there is limited data specifically focusing on the vEDS community.
The aim of this study is to investigate the relationship between health-related anxiety and quality of life in individuals diagnosed with vEDS and their family members. The study will use an online questionnaire design, which you can complete remotely.
The questionnaire will include validated measures of health-anxiety and quality of life, along with demographic and tailored clinical questions. The study will run for a total of 4 months, allowing for sufficient time for recruitment, data collection and analysis.
Method
Data will be collected through an online questionnaire through the University of Sussex, 1 set of questions for patients, 1 set of questions for family members.
Eligibility
To participate in this study you must be aged 18 and over and you or a family member is diagnosed or currently undergoing genetic testing for Vascular Ehlers-Danlos Syndrome.
Lead Researcher
This research is being conducted by Holly Rawlings-Taylor, an undergraduate student in the School of Psychology at the University of Sussex. The project forms part of the requirements for the BSc Psychology with Clinical Approaches degree under the supervision of Professor Sarah King. The research is not externally funded and is being carried out as part of the student’s academic coursework at the University of Sussex.
Update 25/03/26
A heartfelt thank you for your participation!
A massive thank you to all who participated in my health-related anxiety study. Your willingness and contribution to this research is truly valued. Research like this would not be possible without your generosity, time and support from individuals like you.
The motivation behind this research is deeply personal. Following my mum’s diagnosis of vascular Ehlers-Danlos syndrome (vEDS), my family experienced periods of profound anxiety, uncertainty, and the unknown. Through this journey, it became clear that many others within the vEDS community were feeling the same way, yet their experiences were not reflected in existing research. This study was undertaken in the hope of giving voice to those shared feelings and experiences.
With the response we had, it was incredibly moving to see how strongly this research resonated. We hope this brings you reassurance that your feelings are valid, understood and that you are not alone.
We hope that my research will provide a foundation for a better understanding of health-related anxiety in vEDS, and that in the future, more tailored therapeutic approaches are provided to support both individuals and families touched by vEDS.
We are also pleased to share that the prize draw winner has now been contacted an awarded their voucher, so please keep an eye out on your emails.
Thank you again for your openness, your time and your trust. It truly means more than words can express.
