Welcome!
Welcome!
Welcome!
Author • Speaker • Rare Disease Patient Advocate
It took 111 appointments to find out my neck was broken.
Author • Speaker • Rare Disease Patient Advocate
It took 111 appointments to find out my neck was broken.
For more than 25 years,
For more
than 25 years,
I worked in senior leadership roles, with two decades in internal audit and corporate governance. I led global teams and co-founded a tech company building compliance and oversight software for AI.
Then life rewrote itself without permission.
Years of dismissal and misdiagnosis ended with four names that opened the door to many more: Craniocervical Instability (CCI), Chiari Malformation, Tethered Cord, and Hypermobile Ehlers-Danlos Syndrome (hEDS). Names I'd still be searching for if I hadn't turned the investigative instincts I built in audit on my own case.
I'm not a doctor or a researcher. What I share comes from lived experience.
My memoir, You Might Be a Zebra: Rare Unveiled, is the story of unraveling and the woman I became. Alongside it, I've built what I couldn't find during my own search. A patient platform that connects these overlapping conditions and maps the CCI piece that was missing: what it is, what the path looks like, and where to find the few specialists who treat it.
I write for people rebuilding what the world can't see.
I worked in senior leadership roles, with two decades in internal audit and corporate governance. I led global teams and co-founded a tech company building compliance and oversight software for AI.
Then life rewrote itself without permission.
Years of dismissal and misdiagnosis ended with four names that opened the door to many more: Craniocervical Instability (CCI), Chiari Malformation, Tethered Cord, and Hypermobile Ehlers-Danlos Syndrome (hEDS). Names I'd still be searching for if I hadn't turned the investigative instincts I built in audit on my own case.
I'm not a doctor or a researcher. What I share comes from lived experience.
My memoir, You Might Be a Zebra: Rare Unveiled, is the story of unraveling and the woman I became. Alongside it, I've built what I couldn't find during my own search. A patient platform that connects these overlapping conditions and maps the CCI piece that was missing: what it is, what the path looks like, and where to find the few specialists who treat it.
I write for people rebuilding what the world can't see.
I worked in leadership across internal audit and corporate governance. I led global teams and co-founded a tech company building compliance and oversight software for AI.
Then life rewrote itself
without permission.
Years of dismissal and misdiagnosis ended with three names: Craniocervical Instability (CCI), Chiari Malformation, and Hypermobile Ehlers-Danlos Syndrome (hEDS). Names I'd still be searching for if I hadn't taken the investigative instincts I built in audit and oversight and turned them on my own case.
I'm not a doctor or a researcher. What I share comes from lived experience.
My memoir, You Might Be a Zebra: Rare Unveiled, is the story of unraveling. And the woman I became. I'm also building patient resources, a growing hub of guides and roadmaps I needed but couldn't find anywhere else.
I write for people rebuilding what the world can't see.
-Monica