Ehlers-Danlos Society Takes Awareness Month Online in May

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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EDS and awareness

May is Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month. This year, although in-person events have been canceled due to the COVID-19 pandemic, The Ehlers-Danlos Society is challenging the community to help raise awareness of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) by posting on social media and participating in online challenges.

“The more people who know about EDS, HSD, and their related conditions means more funding to advance research and treatments in order to improve the quality of life for all those affected by these conditions worldwide,” Carissa Hocevar, development director of The Ehlers-Danlos Society, said in a video promoting the awareness month. “This May, we are challenging you to spread awareness in any way you can. Every act of awareness makes a difference.”

As an example of an act of awareness, Alan Hakim, the society’s chief medical officer, suggests sharing information about EDS/HSD with healthcare providers. The society offers resources to do this through their ECHO program.

An online form for submitting acts of awareness is available on the society’s website.

Posting to social media is also encouraged. Those interested can tag their posts with the official hashtags #myEDSchallenge and #myHSDchallenge.

“Use every moment you can to educate about EDS and HSD. You never know who might see your posts and finally put together that last missing piece of their diagnostic odyssey,” said Clair Francomano, MD, medical and science board chair at The Ehlers-Danlos Society.

The society is offering limited-edition awareness challenge merchandise — including T-shirts, notebooks, water bottles, tote bags, and sweatshirts — that can be earned by participating in acts of awareness and/or fundraising.

Members of the community are also encouraged to look for creative ways to connect with each other and build community in virtual space — from online hangouts to hosting virtual video game marathons.

“This awareness month, we challenge those that can to step back from the chaos of life and focus some energy onto building up and strengthening our community by participating in our awareness month challenges,” said Marisa Bergfield, research and registry coordinator at the society.

Additional information is available on The Ehler’s-Danlos Society’s May Awareness Month webpage.

“We understand that there are a lot more challenges and hurdles in place to make this year’s awareness months successful, but our community is resilient, strong, and passionate,” said Lara Bloom, president and CEO of the society.

“When there is challenge, there is opportunity to learn and grow. Where there is pain and loss, a reason to be reminded of all the things that there are to be grateful for. We will continue to pursue our mission, all whilst making sure we help support our community as best we can through these hard times,” Bloom added.