“When you hear hoofbeats, think horses, not zebras." That's what doctors are taught, to look for common diagnoses first. But sometimes the hoofbeats really are zebras. I am a zebra.

Ehlers-Danlos syndrome (EDS) is considered a rare condition, and those with it are known as medical zebras. The zebra has been adopted worldwide as a symbol for the EDS community and for rare diseases more broadly.

EDS is genetic. So, I've had it my entire life even though I wasn't diagnosed until I was nearly 49 years old.

Having a health issue that even doctors dismiss makes you feel isolated and abandoned by the very people who should help you.

If you've ever left an appointment in tears, been told to "just lose weight, eat less, and exercise more" or spent years knowing something was wrong while being told it was anxiety - this space is for you.

Zebra in the Desert is a place for me to document, to resource, and to witness. I'm a journalist by training. I know how to find the story, follow the evidence, and build the record. Now I'm turning those skills on my own body and the systems that failed it.

You're not alone out here. Even in the desert, the zebras find each other.

I often have to remind myself, too: I’m not alone out here … right?