The Day Something Felt “Not Quite Right”
One ordinary day, I suddenly had a nosebleed. That alone isn’t unusual—I’ve had them before. But this time, the blood flowed far too smoothly, almost like a water tap being turned on. That’s strange, I remember thinking. It didn’t feel like a typical nosebleed at all.
By evening, I went to the emergency room, more out of caution than panic. The blood test results came back quickly, and they were startling: my platelets were 9. The normal lower limit was around 150.
Within hours, I was admitted to the hospital, receiving urgent transfusions, running through panels of tests, and undergoing a bone marrow biopsy. Eventually, the doctors gently told me:
“You have PNH—and aplastic anemia.”
Hearing the Diagnosis
My first reaction might sound unusual: I felt… okay.
The term “Paroxysmal Nocturnal Hemoglobinuria” was so unfamiliar, so long, that it felt abstract. And the doctors told me it wasn’t cancer, and that I wasn’t in immediate danger.
That reassurance let the stone in my chest fall back down. I think shock would come later, but at that moment, I was oddly calm.
Living With PNH During a Global Pandemic
Shortly after my diagnosis, the world entered the COVID-19 pandemic.
In a strange way, it protected me from some of the usual disruptions chronic patients face. Everyone was suddenly at home. Everyone was disinfecting everything. Suddenly, my high level of caution didn’t feel unusual, it was just what the world was doing.
My treatment settled into a stable rhythm: an infusion every two months. Thankfully, I never felt the severe fatigue that many PNH patients struggle with. My condition stayed well controlled, and physically, I was able to continue my life and studies with surprising normalcy.
Studying Biomedical Science While Living the Biology
Back in 2019, when this all began, I was a third-year undergraduate. Today, I’m doing my PhD in biomedical research.
I’ve never been someone who constantly reads about my disease—doing so actually gives me psychological pressure. But through my training, I’ve gradually come to understand the biology behind PNH: complement pathways, hemolysis, bone marrow failure. And I gained deep respect for the therapies that exist today. As someone who works in the scientific process, I genuinely think:
“Given the complexity of PNH, the current drugs are extremely sophisticated. From my research perspective, I don’t think I could design something more effective right now.”
It’s a humbling but inspiring realization.
How I See My Future Now
Living with a rare disease means living with uncertainty.
My well-being depends on continuous access to treatment and stable medical care. I’m fully aware of the risks. But I’ve also learned to measure my life not by what can happen, but by what I can do, even within constraints.
And surprisingly…I’m doing quite well.
I’ve built a life, built my research, built my future step by step, even with PNH quietly travelling with me.
If there’s one message, I would offer others facing rare diseases, it’s this:
“You don’t need to be fearless, you just need to continue.
Even if the steps are small, they count.”
