Kimberly E

Living with rare diseases and chronic illness comes with a language of its own. If you’ve ever heard people with Ehlers-Danlos Syndrome (EDS) call themselves “zebras” or people with chronic illness refer to themselves as “spoonies,” you might have wondered: What does that mean? These aren’t just quirky nicknames — they’re powerful metaphors that connect us, explain our lives, and make us feel less alone. The Zebra: More Than Just Stripes In medical school, doctors are often taught: “When you...

Hi, I’m Kimberly! My journey into chronic illness advocacy wasn’t something I ever planned for — it was born out of my own lived experience. Years ago, a lumbar puncture left me with a spinal fluid leak. That single event became the turning point that helped me and my doctors uncover something deeper: I live with Hypermobile Ehlers-Danlos Syndrome (hEDS). As time went on, more puzzle pieces clicked into place. I learned that I also have what’s often called the EDS trifecta : hEDS (Hypermobile...