I give thanks to my PNH support system, my family, my fortress
Since my diagnosis they remind me that I never walk this path alone
As the holidays approach, I feel an especially deep pull toward gratitude. Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me many things — resilience, patience, courage — but nothing has been more powerful than the lesson of love. Not the easy, everyday kind, but the kind that shows up in hospital rooms, appointments, and late-night phone calls when fear tries to take hold.
My support system is not just a circle. It is a fortress. Each person within it holds a unique place in my heart, contributing something precious and irreplaceable. Since my diagnosis of PNH and through every challenging step, times when symptoms such as exhaustion tried to dim my hope, the people in my support system reminded me that I am never walking this path alone.
To my mom
Mom, your strength is the kind I’ve admired my entire life, the kind that doesn’t need to be loud to be powerful. You are the definition of steady, unwavering love. Whenever this condition has left me feeling frightened, overwhelmed, or in tears, you have been the first person I reached for.
There were times when I called you crying, unsure of how to deal with the pain, the symptoms, or the fear of what might happen next. And each time you lifted me. You guided me through some of my darkest moments with a kind of calm only a mother can give.
You’ve been supportive in ways words can barely capture. You never treat my condition like a burden.
You’ve been my role model since before these challenges ever entered my life. I’ve always looked up to you — for your resilience, your compassion, your independence, and your heart that somehow holds all of us.
To my dad
Dad, you have led me by example my entire life. Your strength isn’t loud or showy. It’s rooted in discipline, faith, and a calm that seems to steady everyone around you. You’ve always had this way of bringing me back to reality when things feel too big or too heavy. You’ve worked on my spirit just as much as you’ve supported me physically, reminding me to keep my faith strong, to keep my mind clear, and to trust that God will carry me through every trial.
Whenever something was wrong, no matter what you were doing, no matter how busy you were, you dropped everything to make sure I was OK. You didn’t hesitate. If I couldn’t find the strength within myself, you lent me yours until I could stand again.
One thing I laugh about now — though I wasn’t laughing then — is how you used to make me cry when you helped me with my math homework when I was little. Lord, the way you would get frustrated trying to explain those equations! And the way I would get frustrated trying to understand them! Now, I look back and laugh because I see exactly what you were doing: showing me that I was capable of more than I believed.
To my sisters and brothers
Each of you is a piece of my heart, and together you make up the kind of support system that could lift anybody out of the darkest moment. We’ve always had a bond that’s real, raw, and filled with so much love disguised as jokes, laughter, and just the right amount of chaos. We still manage to be … us.
One of the biggest blessings in my life is the way my spirit lifts the moment we see each other or hop on a call. It doesn’t matter what kind of day I’m having or what symptoms I’m dealing with, within minutes, we’re talking mess, cracking jokes, and making those little “don’t play with me” threats that only siblings can get away with. Somehow, even when life is heavy, you all bring a light that reaches me no matter how deep I’ve sunk into my worries.
You don’t tiptoe around me or make me feel fragile. You love me with the same energy we’ve always shared, and that normalcy means more than you know. And you still roll your eyes at me, roast me, and hype me up all in the same breath.
To my husband
To my partner, my protector, my daily dose of peace. Thank you for loving me through every stage of this journey with PNH, even the parts that scared us both. Thank you for the countless hours in waiting rooms, the quiet nights holding my hand, and the courage you show when I sometimes feel my own slipping. You are the heart I lean into, the voice that grounds me, and the love I trust with everything I have.
This year, I give thanks for all of you. You are my hope, my circle, my strength, and the reason I keep fighting with my head high and my spirit steady.
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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