My Story: Ashley, living with polycythemia vera

So it is extremely important to be honest with your community, your support system, and your doctor.

And it's OK to need a little extra help. [MUSIC PLAYING]

I've been living with polycythemia vera since the end of December, 2022.

I was working full-time and I was at the peak of my work cycle.

So I had two panic attacks within maybe two weeks of each other, which was not normal.

I used to have ocular migraines where I would not be able to see things in front of me. And then I would get sick.

And that was what started the initial diagnosis. Polycythemia vera is pretty much your body producing extra blood.

I have polycythemia vera primary, which means my JAK2 gene is mutated.

The first thing I did focus on while going through my diagnosis was my mental health.

I actually started, one, building a community around me, leaning into my family, my friends,

like my running group, people that have the same interests as me. And that also included going to my doctor

and sharing my mental health issues. I've always had a little bit of a struggle with depression

and anxiety. And what I found was when my PV symptoms were the worst was also when my mental health was at its worst.

So before I even started taking a treatment for PV, I actually started on a mood stabilizer with my doctor.

I'm an ultra runner, so I love being outdoors. I love hiking. I love just being in nature.

[LAUGHTER] Yeah, let's go, let's go.

So I made sure to keep doing those things. My doctors never told me to stop doing the things I love.

Prior, I was a pretty busy person. I was always on the go. But with polycythemia vera, I realized that it's

important to set rest aside. I can still achieve my goals, but I just

have to take it a little slower. [AUDIO LOGO]