Dark to Hopeful - Shaquilla Gordon

Shaquilla Gordon lives in Florida and works as a financial analyst, balancing a career with raising two teenage daughters. In May 2017, she was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder that has shaped her resilience and determination after a one-year journey to diagnosis. She’s learned self-advocacy and strength to face the disease and inspire others, sharing it’s possible to overcome the challenges of PNH. Despite hurdles, she remains committed to her career, family, and advocating for PNH awareness. She continues to approach life with strength, grace, and an unwavering focus on what truly matters.

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Rethinking what control looks like after a PNH diagnosis

One of the hardest lessons that comes with living with paroxysmal nocturnal hemoglobinuria (PNH) is learning that control doesn’t always look the way you thought it would. Before a PNH diagnosis, control can feel straightforward. You plan your days, set your goals, and expect your body to cooperate.

Shaquilla Gordon

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In the rare disease community, we find strength in each other

As a patient, when you first hear the words “paroxysmal nocturnal hemoglobinuria” (PNH), life can suddenly feel very small and uncertain. It’s not only because of the diagnosis itself — it’s also the realization that most people have never heard of the condition. Explaining PNH becomes part of your…

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Improving quality of life is key to living fully with PNH

Living with paroxysmal nocturnal hemoglobinuria (PNH) changes many things, but one of the most meaningful shifts happening in the PNH community today is the growing focus on quality of life. For years, conversations about rare diseases focused mainly on survival and symptom management. Today, patients, doctors, and advocates…

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Progress in research and treatments is a reason for holding on to hope

If there’s one thing living with paroxysmal nocturnal hemoglobinuria (PNH) teaches you, it’s that life rarely follows the script you wrote for it. For many of us, PNH didn’t just change our health; it changed how we measure time, how we define strength, and how we celebrate the quiet…

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Becoming a patient advocate gave me purpose in the fight against PNH

Living with paroxysmal nocturnal hemoglobinuria (PNH) is not something you plan for. It’s not something you see coming. One day, life feels normal, and the next, you’re learning a new language made up of lab results, infusion schedules, symptoms (including fatigue that doesn’t go away), and a kind of…

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Why I’m looking forward with hope for new therapies or even a cure

Living with paroxysmal nocturnal hemoglobinuria (PNH) has a way of teaching you to hold two very different emotions at the same time: gratitude for how far medicine has come, and hope for how much further it still needs to go. Since my diagnosis in 2017, I’ve learned that…

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This year, I’m choosing strength, balance, and purpose

Now that we’re settled into 2026, I want to share some intentions I’m setting rather than goals. Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me that life doesn’t always move in straight lines. Sometimes it pauses. Sometimes it forces you to pivot. And sometimes it asks you to…

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When flu type A tests a life already defined by PNH

After the holidays, most of us expect to return to our routine: familiar rhythms, predictable appointments, and the steady hum of normal life. But when influenza type A hit me hard recently, that return felt less like a reset and more like a collision of challenges — one that…

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Getting back to my routine after the holidays as a PNH patient

The holidays always create a pause, a soft space filled with food, family, laughter, and moments where illness politely steps aside, allowing joy to take the lead. But once the decorations come down and the calendar flips, life gently but firmly reminds me that we’re back to regular programming.

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Finding the strength to rise again after a scary night in the ER

Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me many things, including patience, resilience, awareness of my own body and many symptoms, and an appreciation for every stretch of calm between the storms. But every now and then, something reminds me that no matter how strong I’ve…


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