What would happen if there were a cure for PNH?
Thoughts on identity while negotiating a life with a rare disease
Sometimes I daydream about what my world would look like if there were a cure for paroxysmal nocturnal hemoglobinuria (PNH) other than a bone marrow transplant, which is a high-risk procedure. According to PNH News, treatments available for PNH mainly aim to reduce the destruction of blood cells, typically through medication or a stem cell transplant. So what if there were a cure that was neither high risk nor physically demanding?
I wonder about the transmission of such a cure; would it be an infusion, radiation, or pills? And I wonder how it’d make me feel, as “happy” isn’t a strong enough word. Still, there’s a small part of me that feels uneasy about a cure. I’ve accepted my diagnosis and identified myself as a PNH warrior for so many years. Who would I be if my PNH were gone?
When I started learning about my disease and accepting it, the word “chronic” carried a lot of weight. Any sickness I had before — a cold, flu, or sinus infection — was temporary. I was used to the routine of not feeling well for five or six days, then going back to normal and moving on with my life. But “forever” and “never going away” were an entirely new ballgame.
I’d ask myself questions while I processed the word “chronic.” How was it possible I’d never be “normal” again? That I’d have this forever? Why couldn’t I just take medicine and forget this disease ever happened? These queries kept me up at night because the answers always went to the word “chronic,” and nothing I could reason or do would change the outcome: PNH would always be my shadow.
I’d picture the scene from the animated movie “Peter Pan” when Peter is searching for his shadow, as if they were completely different entities. Peter was chasing his shadow to get it back while I didn’t want my PNH shadow; in fact, I was doing everything I could to push it away.
I can’t pinpoint when the shift began and I knew I had to stop fighting this chronic cloud chasing me around. But when that time came and I realized there was nothing I could do to get rid of my condition, I focused more on learning to live with it. Instead of moping around because I felt fatigue, I found ways to function with low energy. It was the same process with my other symptoms: I forced myself to figure out solutions rather than give up.
Who would I become?
As much as it was a shock for me to accept that my PNH would last forever, it’d be just as shocking if there were a cure. I feel I’d have to go through an acceptance cycle all over again. I know that it may make more sense to be ecstatic about a cure and getting back to “normal,” but I’ve lived with the disease so long that I don’t even remember what that is anymore. My “normal” has completely changed, along with who I am.
Who am I, at this point, without PNH? Would having a cure change me just as my diagnosis changed me? Who would I change into?
I’d be lying if I said I wasn’t intimidated by the answers to those questions. But I’ll also say that accepting my incurable disease will probably be the toughest thing I’ll do, and that I now know I can handle anything that comes my way. PNH has taught me to adapt, adjust, and accept the things I cannot control.
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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