What does a PNH survivor actually look like?
I've learned that survival means much more than simply staying alive
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If you asked someone what a survivor looks like, they might picture someone standing on top of a mountain, hands raised, smiling because they finally made it through the storm. They might imagine strength as looking loud, fearless, and untouchable. But as someone living with paroxysmal nocturnal hemoglobinuria (PNH), I’ve learned that survival often looks very different.
A survivor of PNH does not always look like someone who has everything together. Sometimes a survivor looks tired. Sometimes they look like someone carrying an invisible weight that no one else can see. Sometimes they look like someone sitting quietly at a doctor’s appointment, waiting for answers while still trying to hold on to hope.
A PNH survivor may look like a parent making dinner after a long day while fighting symptoms like fatigue that feel heavier than words can explain. They may look like someone showing up to work, attending meetings, helping others, and smiling while carrying worries in the back of their mind. They may look completely ordinary to everyone around them, yet be fighting battles most people will never understand.
And what does a survivor sound like?
“I’m tired today, but I’m still moving.”
“I’m scared, but I’m still hopeful.”
“I don’t know what tomorrow will bring, but I’m still showing up.”
Because surviving isn’t always a loud victory speech. Sometimes it is quiet determination. Sometimes it is getting out of bed on the days when your body wants to stay there. Sometimes it is taking medications or treatments, attending appointments, asking questions, and trusting progress even when the road ahead feels uncertain.
Nine years ago, I may have thought survival meant simply staying alive. Today, I know survival means much more than that. It means continuing to live, continuing to dream, and continuing to believe that your story is still being written.
Medical advancements continue to change the lives of people with PNH, creating opportunities and hope that once seemed impossible. But beyond medicine, there is something equally powerful: our resilience.
A survivor of PNH looks like strength, even on days they do not feel strong.
A survivor sounds like courage, even when their voice shakes.
And if you are reading this while fighting your own battle, whether people can see it or not, remember this: Survivors are not identified by how perfect they appear. They are identified by one simple thing: how they keep going.
And that is powerful.
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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