Area family struggles with Ehlers-Danlos

Posted October 14, 2016

“My calendar, it probably looks like everyone else’s, only it’s not for sports,” Carol Schmitz said, displaying her schedule of medical and therapy appointments to help her children and herself battle a disabling disorder.

During a recent three-day stretch, for example, the family had five medical appointments, typically trips to Milwaukee and Green Bay. And then the fight against this unseen enemy took the family to Texas.

Carol and her three children face a rare, debilitating medical condition that baffles many doctors. She and her husband, Randy, and the kids live west of Clarks Mills. They also have family living in Chilton and the Marytown/St. Joe areas.

Struggle is real

The struggle is real for Carol and their children, Gabrielle, 20, Isaiah, 15, and Luke, 14 as they live with Ehlers-Danlos Syndrome. Randy, although healthy, is deeply affected as he watches his family go through intense pain and disruption of daily life.

When Carol asked her kids how long it had been since they have had a pain-free day, they let out an exasperated laugh. “Maybe a year?” Gabrielle guessed.

“It’s a long road,” Randy said in response. “It’s one day at a time.”

The Schmitz family has the hypermobile type of EDS, which disrupts connective tissue—the body’s “glue”—so the disorder can hit many body systems, he said.

Gabrielle and Isaiah, in particular, suffer intense pain and fatigue daily, and their joints easily dislocate, causing inordinate levels of pain. Just turning the wrong way can pull an ankle, knee or even ribs out of place, and each of the affected family members are unusually flexible, a hallmark of the syndrome.

In addition, all three kids and Carol battle digestive issues. Isaiah has been diagnosed as severely malnourished because he cannot absorb enough nutrients, and Luke has severe stomachaches and abdominal migraines, among a host of symptoms for all four.

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