It was a fear I had never felt before. Fear of the unknown. Fear of my own mortality. Fear of what it meant for my future and what a burden it would be for my family. I called it “fearious” — serious fear. And it’s what I felt when I was diagnosed with PNH. It impacted every facet of my life and was all-consuming.

But I decided I had a choice. I could avoid facing my fears and struggle each day or face them head-on and loosen their hold over me. I found that naming my fears out loud was very helpful in pinpointing what was really wrong and finding ways to work through the fear. I wanted PNH to hear me loud and clear!

I had to face my own mortality. We all do, really — we’re human. But in my case, I knew my affliction — PNH — and that helped give me perspective. Yes, my PNH diagnosis took a lot from me, but it also gave me things I didn’t immediately realize. I gained a deeper appreciation of my family and friends and developed the strength to advocate for myself in ways I never had before.

Now, for every fear I have, I name 2 blessings in my life. This helped me focus more on the positive things, things that PNH can’t take away, like my beautiful grandsons, a supportive husband, loving daughters, and an amazing mother. My life is an incredible gift, and the only thing that has changed is that I have PNH.

My focus now is on what I CAN do and the joys that lie ahead. These things took some time to get to, but once I did, PNH no longer had a hold over my life! I encourage you to try to loosen fear’s grip however you can — we only have this one life, so let’s do it right.