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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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…

Shaquilla Gordon

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Finding the right PNH treatment isn’t a one-time decision

Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me that treatment isn’t one-size-fits-all. It’s a journey, not a destination. When I was diagnosed in May 2017, I was overwhelmed. There were medical terms flying over my head, treatment options that sounded complicated, and an avalanche of fear…

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To travel with a chronic illness, pack caution and carry courage

Travel has always fed my soul. There’s something magical about exploring a new city, tasting different foods, or just watching the sunrise from someplace unfamiliar. But since I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, traveling has taken on a whole new meaning — it’s no longer…

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Living with invisible illness builds strength that others can’t see

There’s a quiet kind of strength that doesn’t get applause. It’s not loud or dramatic. It’s the strength it takes to keep going when your body feels like it’s quitting on you. The kind that gets up anyway, that smiles through fatigue, that finds peace in small moments others might…

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The power of shared decision-making in patient care

Paroxysmal nocturnal hemoglobinuria (PNH) is more than just a tongue twister; it’s a rare, chronic blood disorder that alters every aspect of life. When I was diagnosed with it in 2017, I quickly realized I wouldn’t just be on a physical journey, but also an emotional and informational…

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Feeding my fight: How I eat to live well with PNH

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, food was the last thing on my mind. I was overwhelmed by appointments, blood work, and adjusting to my “new normal.” But over time, I realized that what I put into my body played a huge role in…

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When the storm clears: A day in my life without PNH symptoms

Some days I wake up and forget for a few golden seconds that I have paroxysmal nocturnal hemoglobinuria (PNH). My eyes flutter open, and there’s no tightness in my chest, no pounding in my head, no crushing fatigue pulling me back into the mattress. There’s just morning light, the…

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What does PNH brain fog feel like?

Living with paroxysmal nocturnal hemoglobinuria (PNH) for nearly eight years has shaped how I show up in every part of my life. It’s a quiet battle, mostly invisible to the outside world, but inside, it’s a constant balancing act. One of the most difficult and misunderstood symptoms I…

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What I’ve learned about working full time with a chronic illness

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in May 2017, I had no idea how much my life — and my career — would change. At the time, I was fully immersed in my job as a financial analyst, balancing deadlines, meetings, and the typical stresses of…


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