Michiana woman, South Bend Clinic shed light on connective tissue disorder
SOUTH BEND, Ind. (WNDU) - May is Ehlers-Danlos Syndrome (EDS) Awareness Month, a time to shed light on a group of 13 connective tissue disorders that refer to a defect in the body’s collagen protein and can cause crippling headaches, gastrointestinal issues, along with chronic joint pain.
Hyper-flexible joints are a strong indicator that one could have EDS.
Only 1 in 5,000 people globally are believed to have a form of EDS. But South Bend Clinic Dr. James Harris, MD, thinks the numbers could be higher.
“I’ve got at least 100 or more [EDS] patients in my practice now, and I see new ones almost every day,” remarked Harris. “It just hasn’t been recognized enough. People are becoming more aware of it, and now it’s becoming more diagnosed as well.”
23-year-old Katie Griffith came to Harris five years ago, battling chronic joint pain, GI issues, and migraines. She also was a hyper-flexible child who could bend her legs behind her head.
Piecing together the various symptoms, Harris determined Griffith had hypermobile-EDS (hEDS), the most common form of EDS. A second opinion confirmed the diagnosis.
“I felt a lot of relief, especially after having, like, a lot of doctors or other people be like, ‘No, you’re fine. You’re making it up,’” Griffith recalls.
Over the past five years, Griffith said Harris has helped her manage her EDS symptoms through non-narcotic pain medication; dietary changes; and finding different modalities for dealing with migraines.
She is in her final years of college and is thriving as best as she can while living with a chronic disease.
“There’s no one box for EDS,” Griffith said. “We all have slightly different symptoms or different ways that it affects us. And so I think that anything within your limits that you want to push yourself to do, you can.”
Harris urges anyone with the aforementioned EDS symptoms to speak to their primary care provider.
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