Rare, Relentless, Rising

A rare disease threads itself quietly through a life long before anyone gives it a name. Mine began that way in May 2024 — small signs that something wasn’t lining up, symptoms that didn’t match the textbooks, doctors who looked at me crazy before offering guesses that never quite fit, but that wasn’t before they accused me of doctor shopping and lying. I grew up learning to adapt before I ever learned the word for what I was adapting to.

My diagnosis changed my entire life

Living with an ultra‑rare disease means carrying a kind of double‑life: the one people see, and the one happening inside your body where pain, fatigue, or strange symptoms become routine. It shapes everything — school, friendships, work, even the way you plan a simple day. You learn to measure energy like currency. You learn to explain the unexplainable. You learn to be patient with a body that doesn’t always cooperate.

But the hardest part isn’t the symptoms. It’s the isolation. After being diagnosed, I lost everyone around me. Because I couldn’t prove it, they assumed I was lying like the doctors had. It was me, alone, homeless, and just plain scared. I hit rock bottom mentally and isolated myself for the past 23 months.

I learned to fight for my health

When your condition is so rare that no awareness day exists, no research updates appear, and no one else in the room has ever heard its name, you start to feel like you’re living on an island. I spent endless nights and months searching for information that didn’t exist, waiting for specialists who had never treated someone like me, and trying to advocate for myself in systems that weren’t built for people like us.

That isolation is what pushed me into advocacy. If I couldn’t find a path, I would help build one. I fought for recognition, for visibility, for something as simple — and as powerful — as a proclamation acknowledging my disease. When the governor signed it, it wasn’t just a document. It was proof that people like me deserve to be seen.

Awareness makes a difference for all of us

Finally, December became the official awareness month. I even designed the official ribbon. Kentucky made history by being the first state to ever recognize this disease nationally.

My rare disease has taken things from me, but it has also given me a voice I didn’t know I had. It taught me resilience, empathy, and the courage to speak up—not just for myself, but for every person still searching for answers in the dark.