A recent conference was a chance to connect with my community

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 belonging.

Living with paroxysmal nocturnal hemoglobinuria (PNH) for the past nine years has been a journey full of unexpected turns, challenges, growth, and lessons I never imagined I would learn. When I was diagnosed in 2017, I remember the fear that came with hearing the words attached to a disease that few people had even heard of. There were so many unknowns. I worried about what my future would look like, how my life would change, and whether I would still be able to live the life I had envisioned for myself.

Back then, I could not have imagined how much progress would happen in what feels like a relatively short period of time. Over these nine years, I have witnessed developments in treatments and care that have created opportunities and hope that once seemed out of reach.

I have personally experienced those changes throughout my own journey. There were periods of uncertainty, adjustments, and moments that tested me physically and emotionally. But there has also been progress, and that progress matters. Looking back now, I can truly say that I am not the same person I was at the beginning of this journey. I have grown stronger, more informed, and more hopeful.

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Connecting with others who get it

Going into this conference, I expected to learn more about research and hear updates from experts. I expected information. What I did not expect was the emotional impact of being surrounded by people who truly understood what it means to live with a rare disease.

Walking into a room filled with others who shared similar experiences was something I can only describe as comforting. For once, I wasn’t the only one discussing medications, treatment options, side effects, and the daily realities that can come with managing a condition many people have never heard of. There was comfort in hearing pieces of my own story reflected back through someone else’s journey.

Some people I met were newly diagnosed and trying to process what life might look like moving forward. Others had lived with their conditions for many years and carried wisdom that only experience can teach. Seeing people at different stages of their journey was powerful because it reminded me of how far I have come myself.

What stood out most wasn’t only the presentations or educational sessions. It was the conversations in between. It was sharing meals, exchanging stories, laughing together, and realizing how quickly strangers can feel like family when connected by shared experiences.

As I left Tampa, I carried more than information home with me. I carried perspective. Nine years ago, I could not have pictured where I would be today. While PNH may be part of my story, it does not define it. Looking around that room, the conference reminded me that progress is real, hope continues to grow, and none of us is walking this journey alone.

I would absolutely recommend looking into conferences like these, whether you attend in person or virtually. There is something incredibly valuable about finding a community of people who understand your journey. Beyond the education and resources, you gain connection, support, and a reminder that there are people walking similar paths beside you. Sometimes, finding your community becomes just as important as finding information, because knowing you are not alone can change everything.

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.