Psychosocial Research Study

VEDS Psychosocial Research Study

What psychosocial issues are faced by patients with vascular Ehlers-Danlos syndrome?

We are delighted to announce the results of the first research study which commenced in September 2019.

The study explored the psychosocial issues faced by patients suffering from vascular Ehlers Danlos Syndrome (vEDS).

Psychosocial issues relate to factors that impact an individual’s psychological and social functioning.

By interviewing patients with vEDS Leanne gained a deeper understanding of the vEDS patient experience, which in turn, will improve the support available to patients provided by healthcare professionals, families and friends, as well as set a base for additional research to take place.

Lead researcher Leanne Barrett MSc is a Genetic and Genomic Counselling student at Cardiff University and worked with Annabelle’s Challenge to recruit participants. Leanne also worked closely with Claire Green at the EDS National Diagnostic Service in Sheffield.

We would just like to thank Leanne for her dedication and hard work in completing her study. We cannot imagine how hard it must have been for her to complete a dissertation during a pandemic but she still delivered a rich and beneficial paper.

We would also like to thank all of the participants who took part, your contribution will make a huge impact in improving clinicians understanding of the psychosocial issues faced by vEDS patients. It will also help to improve the services our charity will provide in the future.

"I would like to start by thanking the incredible participants for giving up their time to complete their interviews and share their lives so openly and honestly with me. It was an honour to speak to such a courageous group of individuals." - Leanne Barrett