‘Acts of Awareness’ Welcome in May, Marking EDS and HSD Month

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by Mary Chapman |

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EDS and HSD Awareness Month | Ehlers-Danlos News | illustration of a rare disease

From committing repeat “acts of awareness” to participating in social media challenges, supporters globally are marking Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) month, observed each May.

The month is set aside to bring attention to the group of genetic disorders affecting the connective tissues that give structure to blood vessels, skin, joints, and other organs and tissues. HSDs are a group of conditions related to joint hypermobility.

“Every May, people all over the world show their support for people living with, and affected by, the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD),” the Ehlers-Danlos Society states in its announcement. “Our shared mission is important throughout the year, but May is a time we all come together, share experiences, and highlight what is needed to progress change.”

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The society is presenting a variety of Acts of Awareness challenges, with every kilometer walked or rolled in a wheelchair, every social media mention posted, and every dollar, euro, or pound raised considered an act of awareness. The aim is for 150,000 acts to be performed worldwide, and people are urged to do multiple acts.

Incentive awards for participants, including society merchandise, are based on the number of acts performed. Those tallying 351 or more acts will be given a limited edition May Awareness lapel pin, and be entered into a drawing to win one of five passes to the society’s Global Learning Conference, scheduled for Aug. 4–6 in Scottsdale, Arizona.

Other incentives noted are e-vouchers for an awareness month mug or notebook (60 acts of awareness), a T-shirt (150 acts), or a hoodie or other “May range” society offers (350 acts).

There’s a Light Up challenge, a Social Media challenge, a Fundraising challenge, a Walk & Roll challenge, an EDS ECHO challenge, a Contact Government challenge, and a proclamation challenge.

The Light Up challenge involves requesting that local buildings or landmarks be lit in either black and white for “zebra-strong” awareness, or with red for vascular EDS awareness. The zebra is a symbol of rare diseases.

“The Light Up Challenge is a great way to raise awareness from wherever you are in the world, and your request counts as 5 Acts of Awareness towards the 150,000 global total this May,” the organization stated on a webpage.

Social media challenges are presented in multiple languages, with available Awareness Month frames. Each photo, video, or written post is worth one point.

Fundraising challenges are can also be found in several languages, and detailed suggestions include a 50-50 raffle, costume party, games and quizzes, or a birthday or other celebration.

The Walk & Roll challenge is also seen as a good way of increasing awareness by going distances at your home or in your community, wherever in the world that might be. Activities can include walking on a treadmill, or using a wheelchair or adaptive device to cover the length of your yard or garden. Distances can be recorded using a running and cycling app, a smartphone health app, or a pedometer.

The EDS ECHO challenge involves a free, virtual Ehlers-Danlos Society program of the same name, and is designed to help increase awareness among healthcare professionals globally. Participation in the program, which offers continuing education credits for professionals across all disciplines, garners five Acts of Awareness points.

Contact Government asks challenge participants to write their local lawmakers about the needs of people affected by EDS and HSD. Each request counts as five “acts.”

For the Proclamation challenge, supporters aim to garner official announcements regarding Awareness Month from their state and local governments. Each proclamation requested counts as five acts of awareness.

With all challenges shared on social media, participants are encouraged to use the hashtags #MyEDSChallenge or #MyHSDChallenge.

The Ehlers-Danlos Society offers Awareness Month resources for download, including social media graphics, profile frames, signs, and brochures and posters.