Support Groups

INVERCLYDE: Shelagh – inverclyde@volunteer.ehlers-danlos.org

Hi, I’m Shelagh. I joined EDS UK in 2017 after my daughter started reading about Ehlers-Danlos Syndromes (EDS). She had been back and forth to GPs with various symptoms all of her life, but no-one had joined the dots and she had reached breaking point; she had waited 22 years for a diagnosis and even then only got one because she went privately. Her main diagnosis is generalised Hypermobility Spectrum Disorder (generalised HSD). Through EDS UK and the London Hypermobility Unit our family discovered that this was not an unusual narrative, and we were not alone in wondering whether mental health symptoms were caused by a build-up of physical symptoms over time with no diagnosis and no specialised treatment.

In 2020/21 my Open University MSc project module (for which I gained a distinction) was a critical literature review looking at evidence for a causal relationship linking anxiety and mood disorders with EDS/HSD. I am particularly concerned that diagnostic delay resulting in failure to treat physical symptoms, or incorrect diagnoses resulting in providing the wrong treatment for physical symptoms, pushes people into mental distress. They then become labelled as mental health patients and the likelihood of them receiving a correct diagnosis and correct treatment further decreases.

I wanted to become an EDS UK volunteer coordinator for the Inverclyde area because I am constantly aware of a growing number of EDS UK members (and also non-members) who have struggled to attend support group meetings further afield and although there are very valuable online meetings available these are not always appropriate for everyone.