May – EDS Awareness Month

May is EDS and HSD Awareness Month!

For many people, the journey to a diagnosis of an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) has been a long and challenging road. Poor awareness of the conditions amongst medical professionals means they can go undiagnosed for many years, with people often being misdiagnosed with other conditions, being given incorrect or unnecessary treatment, or no treatment at all. Early diagnosis, and recognition of EDS and HSD, is key to improving quality of life.

A better understanding of EDS and HSD in primary care could make a huge difference to the day-to-day lives of many people struggling to manage their symptoms. Most GPs will not have had any specific training on EDS or other hypermobility-related disorders and therefore their awareness is not high. The EDS toolkit (one of many on the RCGP website) provides GPs with the best sources of reliable, up-to-date information to support you better.

Understanding of the complexities and multi-systemic nature of EDS and HSD from medical professionals in all aspects of care, including rheumatology, physiotherapy and nursing, can ensure a quicker diagnosis, and more accurate, and beneficial care.

Societal awareness and understanding of these conditions, their comorbidities, and chronic illness can also vastly improve the lives of our community. From education to employment, from relationships to friendships, and in understanding disability and often-invisible illness: understanding the impact these conditions have on our lives, and their fluctuating nature, goes so far in improving wellbeing.

May is EDS and HSD Awareness Month – let’s join to raise awareness together. We may not be connected physically, but there is still so much we can do virtually! Keep reading to find out how you can get involved this May. (Shares from Ehlers-Danlos Support UK)

#edsawareness #ehlersdanlossyndrome #hypermobilityspectrumdisorder #hsdawareness #zebrastrong #letsmaketheinvisiblevisible 🦓

Thank you to @EhlersDanlos UK for providing this information for me to share

Look out this month on the blog as there should be more awareness information added

Stay safe and stay home ❤️🦓❤️🦓