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Thursday, November 21, 2024

Senator Johnson sponsors resolution for May as Ehlers-Danlos syndrome awareness month

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State Senator Ruth Johnson | Michigan House Republicans

State Senator Ruth Johnson | Michigan House Republicans

The Michigan Senate on Thursday adopted Sen. Ruth Johnson’s resolution to raise awareness of Ehlers-Danlos Syndrome (EDS), an inherited condition affecting the body's connective tissues.

“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. The resolution highlights that there are 13 types of EDS caused by genetic defects in collagen, a major structural component of the body. Symptoms may include joint hypermobility, loose joints that dislocate easily, joint pain, skin that bruises easily, digestive problems, dizziness and increased heart rate when standing up, and issues with internal organs.

Additionally, 80% of people with EDS also have Postural Orthostatic Tachycardia Syndrome (POTS), which causes symptoms such as dizziness or light-headedness upon standing up quickly from sitting or lying down. Other symptoms include fainting or almost fainting, heart palpitations, chest pain, shortness of breath, shaking, and sweating.

It is estimated that all types of Ehlers-Danlos Syndrome combined affect at least 1 in 5,000 people worldwide. Recent research indicates that EDS is likely underdiagnosed. Awareness has been growing recently with features in National Geographic and Costco Connection magazine.

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