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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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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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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