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Welcome to the Research Reviews! The purpose of this column is to share with you the current research related to DID, EDS, MCAS, POTS, CSF leaks,  and other chronic illnesses — from the point of view of the non-professional. One of the unfortunate facts about medical research is that it’s not widely available to the general public without institutional access to professional journals. I have this access as a researcher myself, albeit in mathematics. But this is a problem beca

I came into this world fighting. I was born premature by emergency C-section, the cord wrapped tight around my neck. I stopped breathing three times before I even had a chance to live. My mom almost died too. The bright hospital lights, the sterile smell of antiseptic, the chaos of doctors and nurses rushing — that was my entry into the world: survival. As a baby, I was always sick. My mom remembers endless ear infections, stomach pain so bad I couldn’t eat without crying, co

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 :

The other day I decided to challenge myself by running 5k (3.2 miles), which is 1.2 miles more than my usual run. The thought of pushing myself in that way excited me, and the rain outside just inspired me to keep running. But the rain turned into a pour, and somewhere around the two-mile mark it became so much more difficult and very hard to see through my glasses. By the time I reached my last half-mile, my body was hurting and my vision was so limited that I wanted to quit

By Christopher H — October 15, 2025 It hurts my heart every time my partner gets sent to doctors who have had little experience with EDS, POTS, MCAS, and CSF leaks because more often than not, she is dismissed or treated as if she is seeking attention, as if she has concocted a slew of unlikely symptoms for some reason or another. And there are times when she is heard, but the medical complexity is so great that the doctor has no chance of seeing the forest through the tree

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