Family conversations about vEDS

Question

How do adults with vascular Ehlers–Danlos syndrome reflect on early experiences of the condition and the family communication surrounding their diagnosis, and what do they feel help or hindered their understanding and coping?

Study Aims & Objectives

• Explore how adults with vEDS first experienced the condition and leant their diagnosis
• Explore how adults with vEDS understand their diagnosis and how this was shared with them
• Explore if family communication helped them make sense of their diagnosis
• Identify what helped or hindered their understanding and coping at the time of first learning their diagnosis 

Methods

This research would be qualitative with May conducting semi structured interviews on Teams with around 12-15 parents. 

Eligibility

To participate in this study you must be an adult living in the UK with a genetically confirmed diagnosis of vascular EDS.

Lead Researcher

May Roberts, MSc Student Genetic Counsellor, Cardiff University.