Becoming a patient advocate gave me purpose in the fight against PNH
Sharing my story reminds others that they're not alone
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Living with paroxysmal nocturnal hemoglobinuria (PNH) is not something you plan for. It’s not something you see coming. One day, life feels normal, and the next, you’re learning a new language made up of lab results, infusion schedules, symptoms (including fatigue that doesn’t go away), and a kind of fear you never knew existed.
I was diagnosed in 2017, and since then, my life has been forever changed — but not only in difficult ways. Being a PNH patient advocate has become one of the most meaningful parts of my journey.
PNH is rare, and that alone can make someone feel invisible. When something is rare, it’s often misunderstood, under-discussed, and under-recognized. In the beginning, I felt isolated, like I was trying to explain something to people that even I didn’t fully understand yet. Over time, I realized that my voice — and our voices as patients — actually matter. They matter in doctors’ offices, in hospitals, in research spaces, and most importantly, in the lives of newly diagnosed patients who are scared and searching for hope.
Advocacy, for me, looks like sharing my story even when it’s uncomfortable. It looks like answering messages from people who were just diagnosed and don’t yet know what questions to ask. It looks like reminding others — and myself — that we are more than our labs, more than our symptoms, and more than our bad days.
Outreach is where the real magic happens. Every time I speak openly about PNH, someone learns they’re not alone. Every time I post or talk about my experience, someone finds the courage to ask their doctor better questions, to push for answers, or to simply keep going. That ripple effect means everything to me.
PNH has taught me patience. It has taught me gratitude. And it has taught me that even in the middle of uncertainty, you can still build a life full of purpose, family, work, dreams, and impact.
I don’t advocate because it’s easy. I advocate because I remember how it felt to be scared and searching. I advocate because awareness saves time, and sometimes time saves lives. And I advocate because if my story can make someone else’s journey even a little lighter, then every hard day I’ve had carries deeper meaning.
If you or someone you love wants to learn more about PNH, these resources are incredibly helpful:
This disease is part of my story, but it will never be the whole story. And as long as I have a voice, I’ll keep using it.
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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