EDS ‘acts of awareness’ being readied around the globe in May

The Ehlers-Danlos Society has prepared a list of ways to get involved

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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A megaphone shouts out awareness ribbons.

May is awareness month for Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD), and this year there are many ways people around the globe will be showing their support.

To help people stay engaged, The Ehlers-Danlos Society has assembled a list of “acts of awareness” — from lighting up a building, hosting a fundraiser, and handing out brochures or hanging posters to participating in the Walk & Roll challenge.

A month of daily writing prompts to help spread the word on social media are available and supporters are also encouraged to request a proclamation from their local government to recognize May as awareness month.

“Our shared mission is important throughout the year, but May is a time we all come together, celebrate our vibrant global community, share experiences, and highlight what is needed to progress change,” the organization explains on its awareness webpage.

EDS is a genetic disease that affects connective tissue, leading to a number of symptoms such as unusually flexible joints and stretchy skin that bruises easily. People with HSD also have joints with a greater than normal range of motion.

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Fundraising ideas for Ehlers-Danlos awareness

The goal of the Walk & Roll challenge is to cover 25,000 miles, the equivalent of the globe’s circumference. Participants can walk or run outside, use a treadmill, ride a bike, or use a wheelchair or other adaptive device to cover any distance they want.

Those who turn their challenge into a fundraiser and raise more than $60 will receive a limited edition, embroidered T-shirt to mark awareness month.

There are other ways to fundraise and The Ehlers-Danlos Society is offering some ideas. These include asking friends and family for a donation in place of a birthday gift, selling raffle tickets, and auctioning off a piece of art, among others.

Supporters can also inquire about lighting up a town hall, a library, or a museum in a black-and-white zebra pattern for EDS any day in May, or go red on May 19 for vascular EDS, a type of the disease.

The organization also encourages supporters to raise awareness on social media under the slogan, #TogetherWeDazzle. There are many graphics available for Facebook and Instagram. Posts, photos, and videos shared on any social media platform should include the hashtags #MyEDSChallenge and #MyHSDChallenge.

In the U.K., Ehlers-Danlos Support UK is launching #EnoughIsEnough  and the organization will ask people to sign petitions to bring issues related to diagnosing and treating EDS and HSD to the government’s attention.

There’s also a Dazzle Walk to raise funds, a social media profile picture frame, and leaflets, posters, badges, T-shirts, and wristbands available to order.