Opinion: My speech highlighted a hidden disability - Morgan Flack, Deputy Mayor for Crawley
As the incoming Deputy Mayor for Crawley, I used the opportunity in my acceptance speech at the most recent Full Council meeting to highlight that Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) awareness month was coming to an end.
EDS is a condition that I was born with which causes a range of issues, including dislocations, pain, and heart and gastro-intestinal complications.
Despite this, it is often an invisible disability, resulting in awkward conversations when using a Blue Badge or mobility aids! These conditions can often go undiagnosed for many years due to poor awareness amongst medical professionals.
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Even after diagnosis, many people with EDS or HSD find they have to battle to ensure their symptoms are taken seriously, and particularly struggle with finding a specialist that considers each of the symptoms and co-morbidities together. As a result, people with the conditions often rely on their community to for support.
Awareness and compassion for these debilitating but fluctuating illnesses in education, employment, and personal relationships can make a world of difference in improving wellbeing for people with the condition.
Raised awareness of EDS and HSD can provide a vital lifeline to people with the conditions, by contributing towards earlier diagnoses and more appropriate care and support being provided. It can be lonely and difficult when you feel that no-one around understands, or perhaps believes, the daily challenges you face to complete basic tasks. We are fortunate in Crawley to have a strong local EDS and HSD charity, with a fantastic ambassador at the helm, that goes above and beyond by delivering brilliant education sessions and working with local NHS provision to increase awareness.
Importantly, it helps to provides a local community of people who can understand and relate to each other. This sense of community is something that Crawley is renowned for and should be celebrated at every opportunity. I have no doubt that Crawley residents will help make our invisible visible with their compassion and by joining together to raise awareness, even now that EDS and HSD awareness month has come to an end.