2021 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 several on the RCGP website) provides GPs with the best sources of reliable, up-to-date information to support you better.

A greater understanding of the complexities and multi-systemic nature of EDS and some types of HSD from health professionals in all aspects of care, including rheumatology, physiotherapy, and nursing, can ensure a quicker diagnosis and more appropriate care.

Societal awareness and understanding of these conditions, their comorbidities, and chronic illness in general 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.

Keep reading to find out how you can get involved this May.

Lady sat on the beach with and EDS UK T-Shirt on

Share your videos

Throughout May we want to post a new video each day to tell the general public about EDS and HSD and why more awareness is needed. We need short videos filmed in landscape (horizontal) mode, no more than 30 seconds long.

If you’d like to help, please record a video starting with ‘Hi/hello, my name is X and I have [Ehlers-Danlos syndrome or hypermobility spectrum disorder]’ and talk about one our topics. Remember you only have 30 seconds!

Adam Wallace walking dressed as a Zebra

Join the EDS UK Dazzle Walk

This May, join us as we aim to raise £5,000 through the inaugural EDS UK Dazzle Walk.

Walking has always been a popular past time, and never more so than now. Whether you choose to walk 5K, 5,000 or 50,000 steps, don your razzliest dazzliest zebra attire, pick a distance that is right for you and get walking.

Two runners in EDS UK tops

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 Instagram image, Facebook cover photo and Twitter cover photo.

EDS and HSD ribbon for colouring

Download, colour and display

Have fun 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 21st! 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