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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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…

Shaquilla Gordon

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Facing the ‘what-ifs’ of PNH complications

Living with paroxysmal nocturnal hemoglobinuria (PNH) isn’t just about managing what’s happening today; it’s also about facing what could happen tomorrow. As much as I try to live in the moment, I’d be lying if I said the potential complications of PNH don’t cross my mind. The truth is,…

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Finding the right doctor to partner with in my PNH care

Living with paroxysmal nocturnal hemoglobinuria (PNH) since 2017 has taught me that finding the right physician is as important as the treatment itself. Because PNH is rare, I need a doctor who is more than a medical expert — they must also be a partner in this…

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We shouldn’t have to battle with insurance to access PNH care

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, I braced myself for fatigue, transfusions, brain fog, and regular blood work. What I didn’t expect was how much energy I’d spend fighting a second battle — one with my health insurance company. Living with a rare disease…

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Staying positive during a PNH flare isn’t easy, but it’s worth it

Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me many things, but one of the hardest lessons has been learning how to stay positive during a flare-up. When symptoms hit — in the form of crushing fatigue, dark urine, headaches, or an overwhelming feeling of weakness —…

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To the newly diagnosed: Welcome to the club no one asks to join

To the newly diagnosed, First, let me say that I wish we were meeting under different circumstances. You’ve just been told you have paroxysmal nocturnal hemoglobinuria (PNH), and I know how heavy those words feel. This is a club you never signed up for, but here you are —…

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I’m wiser today about processing the emotional roller coaster of PNH

It’s been almost four months since I opened up in a column about the emotional roller coaster of living with paroxysmal nocturnal hemoglobinuria (PNH), and truthfully, that ride hasn’t stopped. But I’ve grown. I’ve learned to lean into the twists and turns instead of bracing against them. The…

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Helping my partner better understand PNH brought us closer

When you have a rare disease like paroxysmal nocturnal hemoglobinuria (PNH), it affects every part of your life, including romantic relationships. In addition to managing symptoms and navigating treatments, one of the most difficult parts for me was figuring out how to help my partner truly understand what…

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Back to school with PNH: Pursuing a goal I’d put on hold

Before I got sick, college was part of my plan. It wasn’t just a dream; it was a goal I was actively working toward. Then came my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH), and suddenly everything paused. Life turned into blood tests, infusions, and learning to survive…

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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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