This is what medial research looks like. And it’s worth it to find a cure for CJD. I had a spinal tap and 3 skin biopsies taken.

Why?

Because there is a theory that prion disease could be diagnosed through a skin test. But do prions travel brain to skin or skin to brain? 🧠

So we took skin from my back, leg, and shoulder to test the theory.

And what if we could diagnose prion disease via cerebral spinal fluid? (CSF) so we took my spinal fluid. Which I was stoked to see and it’s clear. I didn’t know that. I thought it would be a *color* or something. 🤷‍♀️

Why do we need a clinical diagnosis? Because we don’t have one. We need one because the days of being able to intervene early are coming!

It’s time to move it along and get closer to treatments and cures.

Sharing to demystify the process. We need more people to volunteer. My voluntary involvement is valid & helpful whether I am pos or neg for the gene. 🧬

This didn’t hurt. I was given lidocaine injections so I felt nothing. It’s a small, annual way to spend my time to help cure this.

After this, an hourlong MRI. Then I walked around San Francisco for an hour, got lunch, listened to live music. I was 💯 able to continue physically going about my day (traveling the city with a backpack 🎒 UCSF > Uber > SFO > PHX).

#CURECJD