Family Struggles With Ehlers-Danlos Syndrome
By Mary Thomsen
Courtesy of the Valders Journal
The full calendar in the Schmitz kitchen does not quite paint the picture of a typical month for an active family, but every appointment helps the family get on with life.
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.
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.Doctors do not know how to treat
Doctors find the joint, muscle and nerve pain in the condition difficult to treat. Sitting through an hour of school can put Isaiah’s back in such spasms that he is up all night, and Gabrielle cannot work for more than a few hours without being debilitated for days. Physical education class was ruled out for Luke after his recent diagnosis.
Isaiah missed his freshman year of high school and all the children have had to modify their education with online and home school options. Carol said she finds it is best when they can take their minds off the pain, a main reason she has kept the teaching job she loves despite the difficulty of her own EDS.
She said symptoms can improve and worsen and are affected by weather and levels of activity. When Gabrielle has an appointment, her parents must be available to drive in case she cannot because of a dislocation or other symptom. Both Carol and Randy said they are grateful for employers who allow them flexible schedules.
Conventional medication and therapies barely touch the pain and other symptoms, so the family decided to head to Texas for a two-week program of biofeedback training for Carol and the kids. The goal is to train their brains to control aspects of the autonomic nervous system, such as heart rate, peripheral blood flow regulation and muscle tension, and initial results were positive.