Living with PNH is about more than just managing a diagnosis

Nine years ago, I heard words that would completely change my life: I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH). At the time, I felt overwhelmed by fear and uncertainty. Like many people diagnosed with a rare disease, I had never heard of it before. Suddenly, I found myself trying to understand medical terms I couldn’t pronounce, learning about blood counts and treatments, and wondering what my future would look like.

A rare diagnosis can often bring a sense of loneliness. I quickly realized that most people around me didn’t know what PNH was, and explaining it was difficult. I could tell someone the name, describe my symptoms, or explain the treatments, but parts of the experience are hard to put into words. There were times I felt scared, frustrated, and uncertain about what was ahead.

But what I have learned over these last nine years is that living with PNH is about much more than managing a diagnosis. It is a journey of resilience.

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I’ve experienced highs and lows along the way. There have been challenges, adjustments, and moments when I had to place my trust in treatments, doctors, and the process itself. I’ve had to adapt to changes and face unexpected complications. But I have also had the opportunity to witness progress — not only in medicine, but also in myself.

One thing that gives me hope is seeing how far treatment options and research have come since my diagnosis in 2017. What once felt like a future filled with unknowns now carries more possibilities. To think about where things were nine years ago compared with where they are now is incredible. Progress may not always feel fast when you’re living through it, but when I stop and look back, I can see just how much has changed.

PNH has also taught me lessons I probably would not have learned otherwise. It has taught me patience. It has taught me strength. It has taught me not to take the good days for granted and to celebrate progress, even in small steps.

Most importantly, it has taught me that I am more than a diagnosis.

PNH may always be part of my story, but it is not the entire story. I am still a mother, a professional, and someone with goals, dreams, and plans for the future. My diagnosis may have changed my path, but it never took away who I am.

And if there is one thing this journey has shown me, it is that strength often appears in ways you never expected to find 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.