Sen. Johnson sponsors Ehlers-Danlos Syndrome Awareness Month resolution

Sen. Johnson sponsors Ehlers-Danlos Syndrome Awareness Month resolution

LANSING, Mich. — The Michigan Senate on Thursday adopted Sen. Ruth Johnson’s resolution to raise awareness of Ehlers-Danlos Syndrome (EDS).

EDS is an inherited condition that affects the connective tissues of the body.

“Ehlers-Danlos Syndrome can significantly impact the lives of those affected, and early and accurate diagnosis can provide the opportunity to create lifesaving medical plans and improve patients’ quality of life,” said Johnson, R-Holly. “There is currently no treatment for Ehlers-Danlos Syndrome and no known cure. With this resolution, we are honoring those who are bravely battling EDS and encouraging scientific research and funding to find effective solutions for patients.”

Senate Resolution 124 proclaims May 2024 as Ehlers-Danlos Syndrome Awareness Month in Michigan.

SR 124 says there are 13 types of EDS caused by genetic defects in collagen, one of the major structural components of the body, and symptoms of Ehlers-Danlos Syndrome 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.

Eighty percent of people with EDS also have Postural Orthostatic Tachycardia Syndrome (POTS), 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 Ehlers-Danlos Syndrome combined affect at least 1 in 5,000 people worldwide with recent research indicating that Ehlers-Danlos Syndrome is likely underdiagnosed. Awareness of the condition has been growing including being recently featured in National Geographic and the Costco Connection magazine.


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