2020 May 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.

Facebook profile frame

A simple way to raise awareness together this May is by updating your profile picture with our new awareness frame! Get your social networks asking to learn more about EDS and HSD by logging into Facebook and adding the frame. You can also download our Facebook cover photo and Twitter cover photo.

Download, colour and display

With the lockdown in place in the UK due to COVID-19 (Coronavirus), a great way to raise awareness (and have fun!) is with our special May Awareness colouring page. Simply download, print, and colour your awareness ribbon. Don’t forget to take a picture and tag EDS UK on social media for us to share your artistic efforts.

Awareness poster

Download, print, or share our new awareness poster! Whether on social media, in local groups, or your work’s intranet, there are ways to raise awareness virtually and highlight the complexities and challenges of EDS and HSD.

#REDS4VEDS day

Get the red ready for Friday May 15th! Go #REDS4VEDS and help raise awareness of vascular Ehlers-Danlos syndrome (vEDS). It’s free and simple to get involved, simply:

  1. Wear something red
  2. Take a picture
  3. Share on your social media using the hashtag #REDS4VEDS