By Jean Doran Matua, Editor
Erin (Diffley) Kjer should be in the prime of her life. In her mid-twenties, though, she has had more injuries, medical tests, and surgical procedures than most people have in a lifetime.
She has had problems since in high school. As one issue is found and worked on, it seems three new ones pop up, repeating in an endless loop.
It was only last year that she was diagnosed with Ehlers-
Danlös Syndrome (EDS), a rare set of connective tissue disorders. It can affect any of her joints, causing them to stretch further than normal (and dislocate), and it can also cause skin to be more stretchy than normal. The diagnosis finally came when she sought help at Mayo Clinic for all her varied symptoms.
Along the way toward that diagnosis, however, and in the process of treating each of the issues as they arise, other chronic diseases have revealed themselves, including severe stomach issues and now possible heart problems.
Kjer has endured numerous hip revision surgeries. She has often been debilitated by dislocated hips, knees, ankles, feet, and shoulder. The frequent dislocations have caused arthritis in those joints. She has developed a severe intolerance for medical adhesives, so often needed in both tests and procedures that she’s had. And, at times, stomach issues have made it impossible to keep anything down.
In medical jargon, rare diseases are called zebras. Medical students, for instance, are taught to resist the urge to assume every condition they see is rare and unusual with the saying, “When you hear hoof beats in the hallway, think horses, not zebras.”
Kjer grew up in Kingston, graduated from Kimball Area High School, and graduated from Hamline University in three years with a degree in Biology. She has been married for nearly three years, and she and her husband Andy Kjer (pronounced chair) share their
St. Cloud apartment with two large dogs. The dogs have been very therapeutic for Erin, often cuddling up to whichever joint is causing her the most pain at the time, and being faithful supports for her – sometimes literally.
With all her injuries and surgeries, Kjer has accumulated a large set of medical support devices (wheelchair, crutches, braces, compression wraps, and more) she has needed for each.
Between the many trips to Mayo Clinic in Rochester, several surgeries, medical devices, medications, and lost work when she is laid up with injuries, Kjer reached out some months ago offering friends and family a way to help her with regular living costs. She set up a wish list on Amazon.com, for instance, where people who wanted to help could purchase needed items that would then be delivered directly to Kjer. She also has a GoFundMe site at https://rb.gy/xvtpus.
Her most recent endeavor is selling T-shirts to help support her medical costs. “Fight like a zebra” is what the shirts say. If interested, you can buy one (or more – Christmas is coming up, after all) at www.bonfire.com/erins-heds-journey/. All profits (about $7.50 per shirt) go directly to Kjer for her medical bills. The site will be active until Nov. 30.
Kjer is preparing for required knee surgery on Dec. 22.
“Until last summer, I had no idea EDS even existed,” Kjer told us. “This disease has turned my world upside-down and has forever changed my future. For me, EDS is a life sentence, but it is one I live with proudly.”