PNH patient advocacy matters because it is the voice of lived experience
When I was diagnosed, I realized I had to become an active participant in my care
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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 that self-advocacy isn’t about having endless energy — it’s about finding your voice, even when it’s difficult.
When I was diagnosed, I quickly realized that I had to become an active participant in my own care. Rare diseases often come with more questions than answers, and no one understands what I’m experiencing quite like I do. I’ve learned to ask questions, request explanations, and speak honestly about my symptoms, even when the conversation feels uncomfortable. Those discussions have helped me receive better care and reminded me that my experiences matter.
Shaquilla Gordon speaks at a conference about PNH, which she was diagnosed with in 2017. (Courtesy of Shaquilla Gordon)
That same belief has led me beyond the exam room and into patient advocacy. I’ve had the privilege of participating in conferences where physicians, pharmaceutical companies, and patients all come together with a common goal: improving the lives of people living with PNH. Walking into those rooms can be intimidating. After all, I’m often surrounded by experts who have spent years studying this disease. But I bring something equally important to the table. I live with it every day.
Advocating for my own experience
No textbook, clinical trial, or laboratory result can fully capture what it feels like to wake up exhausted, worry about complications, or navigate daily life with a rare illness. Sharing those experiences gives healthcare professionals and industry leaders a perspective they can’t learn anywhere else. It reminds everyone involved that behind every study, every treatment, and every statistic is a real person with hopes, fears, and a family.
Being a patient advocate also means listening. I learn just as much from other patients as I hope they learn from me. Every story shared strengthens our community and helps us realize that none of us is facing this journey alone. Together, we celebrate progress, encourage one another through setbacks, and continue pushing for better care and greater awareness.
Self-advocacy doesn’t require a microphone or a conference stage. Sometimes it’s simply telling your physician when something doesn’t feel right. Sometimes it’s asking one more question or requesting another opinion. Every time we speak up for ourselves, we help create a healthcare system that listens more carefully and provides better help for patients like us.
PNH has certainly challenged me, but it has also given me a purpose I never expected. If sharing my journey helps one physician better understand a patient’s experience, encourages one pharmaceutical company to keep patients at the center of its work, or gives one newly diagnosed person the confidence to ask questions, then every difficult conversation has been worthwhile.
Our voices matter. Mine does. Yours does. And together, those voices have the power to shape a better future for everyone living with PNH.
Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.
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