I’m navigating a new chapter with PNH, one between fear and hope

There’s a certain kind of exhaustion that comes with living with paroxysmal nocturnal hemoglobinuria (PNH) that isn’t just physical. It’s emotional, mental, and sometimes even spiritual.

Recently, I found myself back in that space after experiencing a flare-up with symptoms that reminded me just how unpredictable this disease can be.

It started subtly, like it often does. A little more fatigue than usual. A heaviness in my body that sleep didn’t fix. Then came the darker signs, the ones I’ve learned not to ignore. That quiet voice in the back of my mind said, “Something isn’t right,” and just like that, I was pulled back into the reality of managing a condition that doesn’t always follow the rules.

The complication that followed wasn’t something I had fully prepared myself for. Even after years of living with PNH, moments like these can still catch you off guard. There’s a vulnerability in realizing that what once worked for your body may no longer be enough. My treatment plan — something that had become part of my routine, my “normal” — needed to change.

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Into the unknown

Switching from Empaveli (pegcetacoplan) self-infusions to the oral medication Fabhalta (iptacopan) sounds simple on the surface. In many ways, it’s more convenient. No more scheduling life around infusion times. No more needles. No more setting aside hours to sit and wait. But what people don’t always see is the emotional shift that comes with that change.

There’s fear in the unknown. Questions that don’t always have immediate answers. Will this work as well? Will my body respond the way we hope? What if it doesn’t? When you’ve relied on one form of treatment for so long, stepping into something new can feel like letting go of a safety net.

I had to sit with that uncertainty. I had to acknowledge it without letting it take over.

At the same time, there’s also a quiet sense of hope growing alongside the fear. The possibility of a different kind of freedom. The idea that maybe — just maybe — this change could improve my quality of life in ways I hadn’t imagined. That I might regain time, energy, and a sense of ease in my daily routine.

Living with PNH has taught me that two things can exist at once — fear and hope, uncertainty and excitement. This transition reflects that balance. I’m learning to trust the process again, even when it feels uncomfortable.

If there’s one thing I know for sure, it’s this: Resilience isn’t about having all the answers. It’s about continuing forward, even when you don’t have them. And right now, I’m choosing to move forward — with caution, with courage, and with hope for what’s ahead.

Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.