Ellie B's Story

My PNH journey began long before my diagnosis in October 2023. As a female law enforcement officer, I've always fought against being perceived as weak. But I knew something was wrong, and I was struggling more than anyone knew.

In 2019, my health deteriorated rapidly. My hair fell out in clumps, my skin turned alarmingly pale and exhaustion was my constant companion. Caffeine and energy drinks became my lifeline just to complete a work shift. Eventually, I couldn't ignore it anymore and sought medical help.

I desperately wanted answers, but my doctor casually dismissed my concerns, suggesting fatigue was "normal" for women and shift workers. My symptoms persisted, and a severe reaction to a routine vaccination only confirmed my suspicions that something was seriously wrong.

I later discovered that people with PNH can react differently to certain vaccines due to their effect on the immune system. In my case, it triggered hemolysis. My kidneys were in overdrive and I had dark-coloured urine. Looking back, I had all the classic signs of PNH. They were hiding in plain sight, yet to be diagnosed.

When I became pregnant in 2023, my condition just got even worse. I started to experience new symptoms, like iron deficiency, debilitating headaches, and shortness of breath. My midwife initially thought these symptoms were because of my pregnancy, not recognizing the underlying disease.

That summer brought unimaginable heartbreak when I experienced a stillbirth. Amid our grief, my medical team began investigating, discovering my hemoglobin had plummeted along with other alarming blood test results. I was immediately referred to a blood specialist, also known as a hematologist.

My prescribed treatment regimen worked effectively, bringing welcome relief from my symptoms and daily functioning. In 2025, I became pregnant with my second child who was born happy and healthy.

This profound journey transformed how I value my health. Today, I navigate the delicate balance between my demanding career in law enforcement and the joys of motherhood with newfound wisdom and purpose.

The road with PNH continues to present both challenges and unexpected blessings. Through it all, I've discovered a resilience I never knew I possessed. To other PNH patients, especially women who might be questioning their futures, please know this: beyond the diagnosis lies a landscape of genuine possibility and hope. Your dreams aren't over — they're simply being rewritten.