Sterling Heights recognizes May as EDS and HSD Awareness Month

By: Andy Kozlowski | Sterling Heights Sentry | Published May 26, 2021

 Elise Eckel, 18 months old, holds the resolution that the Sterling Heights City Council approved to help raise awareness for her condition.

Elise Eckel, 18 months old, holds the resolution that the Sterling Heights City Council approved to help raise awareness for her condition.

Photo provided by Gina Eckel

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STERLING HEIGHTS — Gina Eckel is a lifelong resident of Sterling Heights, raising three kids with her husband, Brett. Her youngest, Elise, 18 months old, was diagnosed at 13 months with a rare condition that could change her life forever. And now the city of Sterling Heights is helping to raise awareness for the condition in hopes of finding a cure.

The City Council has designated May 2021 as “Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness Month.” The two groups of disorders are abbreviated EDS and HSD. Elise was diagnosed with an especially rare type of EDS called arthrochalasia EDS, identified via genetic testing. It explains symptoms such as hypermobility, low muscle tone and hip dysplasia.

While Elise is otherwise a happy and healthy child, her life has become busy with doctor appointments and therapies that aim to help her manage a condition that is progressive and can lead to chronic pain. More than one in 5,000 people live with EDS, which affects the body’s connective tissues, including the skin, joints, blood vessels, the gut, and other tissues and organs. Men and women of every race and age can be diagnosed with this lifelong condition.

HSD, meanwhile, can arise in a person who does not have the defining features of an underlying syndrome such as EDS or other heritable disorders of connective tissue. Individuals with HSD have musculoskeletal complications of joint hypermobility and joint instability, which can make them more prone to injury, joint pain and dislocations.

“We are very grateful God gave Elise’s geneticist the wisdom to test for various types of EDS — there are 13 subtypes. An early diagnosis means we can get her the help she needs and avoid unsuitable treatments or unnecessary surgeries in the future,” Eckel said in an email.

In its resolution April 20, the Sterling Heights City Council noted that, while there is currently no treatment and no known cure, individuals with EDS and HSD can still benefit from an early and accurate diagnosis, which can lead to medical plans that improve their quality of life. There is also a network of support groups for those with EDS and HSD, which can connect them to resources for better managing the condition.

To underscore how poorly understood the condition is, the symbol of the EDS and HSD is the zebra, derived from a saying taught to medical students: “When you hear hoofbeats behind you, don’t expect to see a zebra.”  The idea is that those with rare and chronic conditions such as EDS and HSD often spend years searching for the source of their symptoms before arriving at the proper diagnosis, because doctors tend to consider more common explanations first, sometimes overlooking the actual cause. EDS and HSD are the figurative “zebras.”

That’s another reason more awareness is needed. City officials hope that raising awareness for EDS and HSD will help elevate the disorders’ profiles in the medical community, leading to a more timely diagnosis and more research that could bring about new treatments and a cure.

“We’re honored that the city in which we grew up, got married, worship, live and raise our family has gotten behind us to support our awareness efforts, and as a result, we have been able to reach more people within our community,” Eckel said. “We’re hopeful greater awareness will lead to more research, new treatments and a cure for people like Elise who live with EDS.”

Michael Taylor, the mayor of Sterling Heights, said in a statement that he and the other members of the City Council are happy to help.

“Sterling Heights is proud of our focus on inclusivity. It’s at the heart of the decisions we make, from adding universally accessible canoe and kayak launches, to adaptive recreation programming and … cleanup days that utilize volunteers to help residents who can’t physically or financially maintain their yard,” Taylor said. “Our City Council is proud to adopt resolutions that help raise awareness about specific causes or concerns for various groups.

“The recent Ehlers-Danlos Syndromes and Asian Hate Crimes resolutions, as well as the upcoming Pride Month and Juneteenth resolutions, are some great examples,” he said. “When we adopt these resolutions, we really encourage residents to learn more about their neighbors and the causes and issues important to them. It’s an important step to unifying our community.”

More information is available at www.ehlers-danlos.com.

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