Talking about vEDS in families
Talking about vEDS in families: adults’ experiences of first learning their diagnosis
Objective
To determine how adults with vascular Ehlers–Danlos syndrome make sense of the way their diagnosis was first discussed within their family, and what do they feel helped or hindered them in understanding and coping.
Methods
This research would be qualitative with May conducting semi structured interviews on Teams with around 10-15 parents.
Eligibility
To participate in this study you must be a vEDS parent resident in the UK.
Lead Researcher
May Roberts, MSc Student Genetic Counsellor, Cardiff University.
