To the newly diagnosed: Welcome to the club no one asks to join

To the newly diagnosed,

First, let me say that I wish we were meeting under different circumstances. You’ve just been told you have paroxysmal nocturnal hemoglobinuria (PNH), and I know how heavy those words feel. This is a club you never signed up for, but here you are — and I want you to know you’re not alone.

When I was diagnosed in May 2017, I thought my world had been divided into “before” and “after.” In the beginning, I saw only the loss: the fatigue, the unpredictability, the way plans had to be made with an asterisk. But with time, I realized there’s more to this life than the symptoms. There’s still laughter, love, and purpose, even if the pace looks different.

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Here’s the first thing you need to know: You don’t have to be strong every second. Some days you’ll feel like you can conquer the world. Other days, getting out of bed will be your victory. Both are equally valid.

The second thing: Build your support network early. Doctors are important, yes, but so are friends who check in, family who step up, and fellow PNH patients who truly understand. For me, the Aplastic Anemia and MDS International Foundation became a lifeline, a place where I could find reliable information and real human connection.

And third: Educate yourself. The more you know, the more empowered you’ll feel. Sites like PNH Source and PNH News can help you understand your options and prepare you for conversations with your healthcare team. Wanting to be informed doesn’t make you a difficult patient; it makes you an active partner in your care.

Will you have hard days? Absolutely. But you’ll also have days that feel beautifully normal — cooking dinner, laughing with friends, watching your favorite show with a blanket and a cup of tea. You’ll find joy in places you may have overlooked before.

I won’t sugarcoat it: PNH will change your life. But change isn’t always bad. It will slow you down in ways that make you notice things — your children’s voices, the way the sky looks after rain, the taste of coffee on a quiet morning.

So welcome, friend. Not just to an illness, but to a community that will remind you that you’re more than three intimidating words on a medical chart. You’re still you, and that’s the part that PNH can never take away.

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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