Supporters ready to light things up in May for disease awareness

EDS organizations raising awareness about connective tissue disorders

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by Mary Chapman |

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Four children hold hands as they stand side by side, with one in a wheelchair.

This May, people around the globe will participate in a number of ways to raise awareness about Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD).

The annual awareness month campaign targets not only the general public, but also policymakers, public authorities, industry representatives, health professionals, and scientists.

In the U.S., The Ehlers-Danlos Society has compiled a list of “acts of awareness” — from illuminating a landmark building and hosting an event, to sharing on social media and participating in various challenges, including fundraising. Supporters may also request that local governments proclaim May as EDS and HSD Awareness Month, and tell their healthcare team about the medical education program EDS ECHO.

A genetic disease, EDS affects connective tissue, resulting in a number of symptoms such as abnormally flexible joints and stretchy, easily bruised skin. Individuals with HSD also have joints with a greater-than-normal range of motion.

“Every May, people all over the world show their support for those who have a type of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD),” the organization states on an awareness month webpage. “Our shared mission is important throughout the year, but May is a time when we all come together, celebrate our vibrant global community, share experiences, and highlight what is needed for progress!”

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Supporters asked to request that buildings be lit up in orange

For its Light it Up challenge, the organization is asking supporters to request that national buildings or monuments be illuminated in orange, the color representing EDS and HSD, on May 4 or any day in the month. Participants may also “go red” on May 17, set aside to heighten awareness of vascular Ehlers-Danlos syndrome. The organization is providing templates for emailed requests.

Confirmed structures so far include the CN Tower in Toronto, Canada, The Gateway Arch in St. Louis, Missouri, Smeaton’s Tower in Plymouth, England, and the clock tower of the Dean B. Ellis Library at Arkansas State University in Jonesboro, Arkansas.

Another event celebrating this year’s awareness month is the Walk & Roll challenge, which seeks participants to log a total of 25,000 miles, equal to the globe’s circumference. Participants may walk or run outdoors, using a treadmill, bike, or wheelchair or other adaptive equipment to cover any distance desired.

Participants who incorporate fundraising into their challenge and raise more than $60 will get a limited-edition T-shirt to mark the month.

May is a time when we all come together, celebrate our vibrant global community, share experiences, and highlight what is needed for progress!

Other ideas include participating in the Raise Awareness challenge, which calls for switching out Facebook profiles, sharing brochures and posters, and using provided Facebook and Instagram story stickers. The Social Media Awareness challenge includes daily themes for the month. Those who complete an “act of awareness” in May will receive an EDS certificate of participation.

Elsewhere, Ehlers-Danlos Syndromes New Zealand is marking the month by encouraging the creation of fundraisers to support the organization’s programs, services, and resources, including publication of a booklet to help the newly diagnosed navigate the early stages of their journey.

Other suggestions to help raise awareness and funds include participation in this year’s Move for Awareness Distance Challenge, the organization’s Read-a-Thon, and its Virtual Movie Quiz Night. Participants of all ages are invited to join an art competition, as well as this year’s Social Media Challenge.