LANSING, Mich. — Sen. Ruth Johnson’s resolution to raise awareness of Ehlers-Danlos Syndrome (EDS) was adopted by the Michigan Senate on Wednesday.
“This resolution is about honoring those in our state who are bravely battling EDS, raising awareness of this condition and hopefully encouraging more scientific research and funding to find effective solutions for patients,” said Johnson, R-Holly. “This is a condition that can significantly impact the lives of those affected.”
Ehlers-Danlos Syndrome is an inherited condition that affects the connective tissues of the body and causes a wide range of symptoms. There are 13 types of EDS caused by genetic defects in collagen, one of the major structural components of the body, and symptoms of EDS may include joint hypermobility, loose, unstable joints that dislocate easily, joint pain, skin that bruises easily, digestive problems, dizziness and increased heart rate when standing up, problems with internal organs, among others.
“Although there is currently no treatment for Ehlers-Danlos Syndrome and no known cure, early and accurate diagnosis can give patients and doctors time to create proactive medical plans and improve the patient’s quality of life,” said Johnson.
Eighty percent of people with EDS also have postural orthostatic tachycardia syndrome, which is when someone’s heart rate increases very quickly after getting up from sitting or lying down, causing symptoms such as dizziness or light-headedness, fainting or almost fainting, heart palpitations, chest pain, shortness of breath, and shaking and sweating.
It is estimated that the prevalence of all types of EDS combined affect at least 1 in 5,000 people worldwide, with recent research indicating that Ehlers-Danlos Syndrome is likely underdiagnosed.
Senate Resolution 48 proclaims May 2025 as Ehlers-Danlos Syndrome Awareness Month in Michigan.
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Photo caption: Sens. Ruth Johnson, R-Holly, and Jon Bumstead, R-North Muskegon, welcome Gabrielle Jones to the Senate chamber. Jones is a member of the Teen Council of the Ehlers-Danlos Society, a nonprofit dedicated to education and advocacy. She was diagnosed with Ehlers-Danlos Syndrome in 2021 and is a student at North Muskegon High School.
