First in a series. Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me that some of the hardest decisions aren’t the ones we have to make today — they’re the ones we know we may have to face someday. For me, one of those decisions is the possibility of…
Dark to Hopeful - a Column by Shaquilla Gordon
There’s a common belief that giving back to your community requires endless energy, perfect health, or plenty of free time. The truth is, some of the most meaningful acts of kindness come from people who are facing their own challenges every single day, just like I am with paroxysmal…
There are days when speaking up feels like the hardest thing I will do. Living with paroxysmal nocturnal hemoglobinuria (PNH) means balancing doctor appointments, treatments, fatigue, and the uncertainty that comes with a rare diagnosis. On those days, it would be easy to stay quiet. But I’ve learned…
One of the biggest lessons that paroxysmal nocturnal hemoglobinuria (PNH) has taught me wasn’t about medicine or lab results. It was about rest. For years, I viewed rest as something you earned. If I finished my work, cleaned the house, ran errands, and took care of everyone else, then…
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, I expected the physical challenges. I knew there would be doctor appointments, medications, blood tests, and uncertainty about the future. What I didn’t expect was how much PNH would affect my self-esteem. Before my diagnosis, I was…
One of the toughest questions I’ve faced with paroxysmal nocturnal hemoglobinuria (PNH) isn’t if my treatment is working. It’s whether the symptoms I continue experiencing are left over from the disease or whether I’ve simply become accustomed to not feeling well. When you live with a rare chronic illness…
If you asked someone what a survivor looks like, they might picture someone standing on top of a mountain, hands raised, smiling because they finally made it through the storm. They might imagine strength as looking loud, fearless, and untouchable. But as someone living with paroxysmal nocturnal hemoglobinuria (PNH),…
Nine years ago, I heard words that would completely change my life: I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH). At the time, I felt overwhelmed by fear and uncertainty. Like many people diagnosed with a rare disease, I had never heard of it before. Suddenly, I found myself…
On May 16, I had the opportunity to attend a patient and family conference in Tampa, Florida, with the Aplastic Anemia and MDS International Foundation, and I walked away with something much bigger than the usual information and resources. I left with connection, understanding, and a renewed sense of…
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…
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