03/20/2026
I stood here for the girl who knew something was wrong and wasn’t believed.
For years, clear red flags were missed for conditions—some of which I was born with—leading to delayed diagnosis after progression that resulted in permanent damage and a spinal cord injury.
To the providers who heard my cries and reassured me it was normal… it wasn’t.
It was Endometriosis.
It was Ehlers-Danlos.
It was Congenital Tethered Cord.
It was POTS… and more.
For the pain that was minimized
For the damage that didn’t have to happen
I brought my story to Capitol Hill, advocating for change and funding, and was grateful to meet with office. I got to be in the room where it happens.
Advocating for Congress to urge CMS to create a CPT code for endometriosis excision to improve access, for the passage of the Endometriosis CARES Act to support research funding, and for earlier diagnosis, better care, and recognition of comorbidities — including a red flag screening and referral framework I’ve been developing based on patterns from my own experience of delays in appropriate referral and evaluation.
I can’t change what happened to me, and I will continue to live with the impact of those delays.
But I can take what I went through and turn it into meaningful change—helping ensure fewer people experience preventable delays that lead to permanent damage, and giving my pain and spinal cord injury some purpose.
Learn more about my story and red flag screening & referral framework I’ve been developing over the past few years, available on my Substack. Link in bio 💛
https://substack.com/
