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 realized I had power over my own future — not PNH.

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.

PNH gifted me with the creativity to find ways to still do things I love and allowed me to see my blessings more clearly, shifting my focus to what I have, not what I lost.

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.


The above represents a real person living with PNH, telling their story in their own words. This individual was compensated by Apellis for the time required to share their story. Every person’s experience with PNH is unique. This story does not include individual treatment or medical advice. You should speak with your doctor about questions you may have about PNH, its symptoms, and treatment.

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