By Oregon State Representative Emily McIntire,
Press Release,
Today, May 1, 2025 marks the first day of Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness Month. Ehlers-Danlos syndromes (EDS) refers to a group of 13 heritable connective tissue disorders with each type of EDS having its own set of symptoms. Some symptoms are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility. Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Other symptoms of HSD include fatigue, headaches, gastrointestinal problems, and autonomic dysfunction.
Earlier this year, Rep. Emily McIntire (R-Eagle Point) introduced HCR 4 to officially designate May of 2025 as Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness Month. The resolution sailed through the House with nearly unanimous support, passed in the Senate unanimously, and was officially filed with the Secretary of State’s office in April.
“Oregonians who experience EDS and HSD know how debilitating and painful they can be. Bringing awareness and visibility to Oregonians who suffer from these conditions is critical to ensuring doctors have the knowledge and tools to recognize the symptoms, accurately diagnose, and treat those who have EDS and HSD,” said Rep. McIntire. “I am inspired by those who live with these conditions every day. I am honored to join their efforts to educate other Oregonians and raise awareness, with the hope that one day we will find a better way to treat EDS and HSD.”
There is currently no cure for EDS or HSD. Cases are rare and under-diagnosed, as well as misdiagnosed for other conditions, due to the lack of awareness in the medical profession. EDS is estimated to affect one in 5,000 people, highlighting the need for awareness and research.
“It is time to bring this out of the shadows and to bring awareness to this condition. For far too long we have been misdiagnosed and treated unfairly. I’m hoping that by bringing this to the forefront more medical professionals and employers will understand the need for treatment and understanding for those that suffer from these conditions,” said Wendy Bernard of Southern Oregon, who suffers from EDS and testified in support of the resolution in the House Rules Committee. “We need awareness to increase research efforts and access to treatment options.”
“If you can’t connect the issues, think ‘connective tissues,’” said Dr. Christine Gleason, who also testified, referencing a phrase used to emphasize the importance of considering EDS and HSD when patients show symptoms that don’t seem to be connected.
Rep. McIntire is planning to introduce a bill in the 2026 Legislative Session to permanently designate May as Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness Month.
Additional information about EDS and HSD can be found on the Ehlers-Danlos Society website.
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