MAY – EDS Awareness Month

Despite the fact that Ehlers-Danlos Syndrome is a widespread condition, many people might not be sufficiently informed about it. Fortunately, since this month is Ehlers-Danlos Syndromes Awareness Month , there is a fantastic opportunity to address this problem. This campaign was started with the intention of educating, engaging, and raising money for the Ehlers-Danlos community while also increasing research funding.

This month, there are several exciting events to attend that aim to raise awareness for important causes. One such event that has already taken place was organized by the Ehlers-Danlos Society, called "Light it Up". On May 4th, various structures and landmarks were illuminated in black and white to raise awareness about the Ehlers-Danlos syndromes. Another "Light it Up" event is scheduled for May 19th, which will focus on increasing awareness for vascular-type EDS. This time, the color red has been chosen, and you can join in by using the hashtag #REDS4VEDS when posting photos of yourself wearing red on social media.

Also we gladly encourage you to take part in the Walk & Roll Challenge if you want to burn some calories and spread awareness during this month. You can exercise in any of the following ways with this challenge: walking, wheeling, walking or running on a treadmill, using a wheelchair or other adaptive device, cycling, or walking. By taking part, you can support EDS and stay in shape while raising awareness and funding.

Last but not least, use the hashtags #myEDSchallenge and #myHSDchallenge to share your personal EDS experiences and stories on social media.

What plans do you have for this month? Please share with us in the comment section.

Author: Ozan Soyer, MD

Light it-up images are:

The Lowry Ave Bridge lit up for EDS and HSD awareness. Minneapolis, Minnesota, USA.

The Monumento al Pípila and the Alhóndiga de Granaditas illuminated in red to raise awareness and show support for people with vEDS. Guanajuato, Mexico.