Feeding my fight: How I eat to live well with PNH

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, food was the last thing on my mind. I was overwhelmed by appointments, blood work, and adjusting to my “new normal.” But over time, I realized that what I put into my body played a huge role in how I felt day to day. Especially with symptoms like fatigue and low blood counts, every little choice mattered.

I don’t follow a “perfect” diet — there’s no magic menu that fixes PNH. But I’ve learned to build my meals around foods that nourish my blood and energy. For me, that means focusing on iron-rich foods, such as spinach, lentils, and lean red meat. I add spinach to everything — smoothies, omelets, pasta dishes, you name it. (The Cleveland Clinic offers a great guide if you’re looking for ways to add more iron to your meals.)

Vitamin C is another quiet hero in my diet. It helps my body absorb iron better, so I always pair foods like spinach or beef with something like oranges, strawberries, or bell peppers. Sometimes it’s as simple as tossing berries onto a spinach salad or having a little orange juice with breakfast.

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Because PNH can put extra stress on the bone marrow, I also make sure to get plenty of folate and B12. Beans, avocado, eggs, and fortified cereals are staples in my kitchen. (The National Institutes of Health’s Office of Dietary Supplements has an easy-to-read article about why folate matters so much for blood health.)

One thing that surprised me was how much hydration impacted my fatigue. I try to drink half my body weight in ounces of water each day. Some days it’s herbal teas, other days it’s fruit-infused water, but staying hydrated really helps keep that crushing fatigue at bay — at least a little.

I also pay attention to how food makes me feel. Heavy, greasy meals tend to leave me feeling more drained, so I save those for rare treats. Most days, I aim for lighter, balanced meals that don’t send me into a food coma.

Living with PNH has taught me that food isn’t about following a strict or perfect diet — it’s about giving my body tools to fight just a little bit harder. It’s about making small choices that add up to better days.

And yes, I still enjoy my guilty pleasures. It’s about balance, not deprivation.

If you’re living with PNH, too, or even just struggling with low energy, give yourself grace. Listen to your body. Start with small changes. You’ll be amazed at how much better you can feel when your plate is working with you, not against you.

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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