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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I’m finding my rhythm again thanks to a positive turn in my PNH journey

Note: This column describes the author’s experiences with Fabhalta (iptacopan). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. There’s something powerful about being able to say, “This is getting better.” After the uncertainty that came with my recent medication change for…

Shaquilla Gordon

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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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I give thanks to my PNH support system, my family, my fortress

As the holidays approach, I feel an especially deep pull toward gratitude. Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me many things — resilience, patience, courage — but nothing has been more powerful than the lesson of love. Not the easy, everyday kind, but the kind that shows…

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Family planning can be more complicated with a PNH diagnosis

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, family planning wasn’t exactly the first thing on my mind. I was still trying to wrap my head around what this rare disease even meant for my life. But as time went on and the dust of the…

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Living with the fear of aplastic anemia while managing PNH

When you live with paroxysmal nocturnal hemoglobinuria (PNH), you learn early on that no two days are ever the same. Some days, I wake up with energy and hope. Other days, I’m reminded that this rare disease is unpredictable — it can shift and change without warning. One of…

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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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