Research into the incidence of depression and anxiety

Asya Choudry, MSc in Genetic Counselling Student, Cardiff University

I invite you to take part in a research project comparing the incidence of depression and anxiety in individuals diagnosed with different types of Ehlers-Danlos syndrome, using an online survey which would take 5 minutes to complete.

I will be comparing the rates of anxiety and depression in participants diagnosed with Hypermobility type Ehlers-Danlos syndrome (HEDS) in comparison to those diagnosed with the rarer types of EDS.  I hope to use the information from this research to inform clinical practice for treating EDS, and to start to understand the causes of depression and anxiety in EDS.  Better understanding of mental health issues may aid intervention through more accurate treatment planning and appropriate genetic counselling.

There is extensive evidence of the high likelihood of having mental health issues with chronic pain and fatigue conditions such as Ehlers-Danlos syndrome.  Chronic pain has been shown in other chronic illnesses to trigger depression, exacerbate pain, and significantly decrease quality of life. A recent study conducted in Sweden in 2016 showed that depression was 1.5 times more likely in HEDS patients when compared to non-affected siblings, and 3.4 times more likely when compared to a large control population without HEDS. To date there have been no studies comparing the frequency of anxiety and depression between HEDS and the rarer types of EDS, for example Classical EDS and Vascular type.

The survey is now closed.

For further information on this study, please follow the two links below:

Details of ethical approval
ethical approval.pdf
Adobe Acrobat document [290.2 KB]
Further participation information
Participant Information Sheet V2.docx
Microsoft Word document [20.3 KB]
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