Finding the right PNH treatment isn’t a one-time decision
As my health and needs shift, I'm keeping my options open

Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me that treatment isn’t one-size-fits-all. It’s a journey, not a destination. When I was diagnosed in May 2017, I was overwhelmed. There were medical terms flying over my head, treatment options that sounded complicated, and an avalanche of fear that came with living with a rare blood disorder.
But as the dust settled, I realized that choosing a treatment plan wasn’t about picking the “best” one on paper; it was about finding what worked for me, my body, my lifestyle, and my peace of mind.
After talking extensively with my hematologist, I started a treatment that seemed like the right fit at the time. It gave me stability, fewer flare-ups, and, most importantly, hope. I won’t pretend it was an easy road. There were days I questioned if it was the right choice, if I should’ve been doing something different, if I was missing out on a better option.
Years after my diagnosis, I did make the decision to switch, and this change turned out to be the right choice for me.
But what kept me grounded was staying informed and keeping the lines of communication open with my care team. I never saw treatment as a permanent label. It was a tool, and tools can change as your needs change.
I stayed connected to the PNH community, reading about advancements and listening to other patients’ experiences. New treatments have emerged since my diagnosis, and instead of shutting the door, I’ve kept my options open. It’s not about chasing every new thing, but about being prepared if my health shifts and my current plan no longer meets my needs.
Finding the right treatment wasn’t just about managing PNH; it was about reclaiming control over my life. As a mom to two teenage daughters, I couldn’t afford to live in fear or indecision. I had to be proactive, but flexible. I had to learn that it’s OK to change course if needed. That doesn’t mean my current treatment isn’t working; it just means I’m always my own best advocate.
If you’re navigating PNH, my advice is this: Find what works for you, trust your body, and never feel guilty for asking questions or exploring new options. Medicine is evolving, and so are we.
For more resources on PNH and treatment options, visit PNHSource, the National Organization for Rare Disorders, and the Aplastic Anemia and MDS International Foundation.
Your health journey is yours, and staying open to what’s next is one of the most powerful decisions you can make.
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.
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