Back to school with PNH: Pursuing a goal I’d put on hold
Living with a rare disease like PNH means adjusting, not abandoning, your goals
Before I got sick, college was part of my plan. It wasn’t just a dream; it was a goal I was actively working toward. Then came my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH), and suddenly everything paused. Life turned into blood tests, infusions, and learning to survive a disease I’d never even heard of before. School faded into the background, replaced by fatigue, brain fog, and doctor appointments.
But the desire to go to college never left me.
Living with a rare disease like PNH means adjusting, not abandoning, your goals. After years of managing my symptoms, understanding my body’s limits, and building a stronger care routine, I felt something stirring again: the pull to go back and finish what I’d started.
It wasn’t an easy decision. I had doubts. Would I have the energy to keep up? Could I handle the mental load? What if my health got worse mid-semester?
But then I asked myself: “What if I can do it — just differently?”
I enrolled part time, chose flexible online classes, and spoke with my adviser and professors early on about my condition. I leaned on the support of my care team, who helped me balance my treatments and schoolwork. Organizations like the Aplastic Anemia and MDS International Foundation gave me confidence by reminding me that PNH patients can still pursue big dreams — just on our own terms.
PNH didn’t take away my ability to learn. It just changed how I needed to approach it. I studied during my “good hours,” asked for extensions when necessary, and gave myself permission to rest without guilt. I’ve been inspired to share my experience and advocate for others doing the same.
One of the biggest challenges was managing brain fog. Some days I’d reread the same paragraph five times and still feel lost. But I’ve learned to be kind to myself, to celebrate small progress and recognize that persistence, not perfection, is what moves me forward.
Going back to school while living with PNH has given me more than knowledge. It’s restored part of my identity, the version of me who dreams boldly and follows through, even if the timeline looks different now.
If you’re living with a rare disease and have a goal you put on hold, know this: It’s not too late. Your illness may change your path, but it doesn’t erase your purpose. You still get to dream. You still get to finish.
And you’re strong enough to start again.
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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