Explore these everyday stories from people living with PNH
My grandma always told me that your mind is more powerful than your body. When I was diagnosed with PNH in 2021, I truly didn’t know what to think, and I was in a dark place. I was only 26 at the time. In talking to my parents, doctors, and friends, I felt like my voice and decisions were being drowned out. As my body was changing and I was learning what I could and couldn’t do because of PNH, I was at an impasse on how I should move forward with my life.
I thought back to my grandma and decided I wouldn’t let this disease control me. Instead, I had to game-plan, a way to live the life I wanted as much as possible. For me, this started with changing my mentality and finding my voice.
I started by talking to my doctor and figuring out how to connect with other people with PNH. I wanted to ask questions about day-to-day life and learn from their experiences so I could better understand what might work for me. My first thought was that I would just do everything I originally aspired to do professionally, socially, and emotionally. But I knew that wouldn’t work, so I wanted to learn more about what I might be up against from others who have gone through the same thing.
Every person I talked to had a different experience, but they were all so positive and hopeful that it fueled my fire.
Talking to others in the PNH community really boosted my self-confidence and reminded me that I could approach my life with PNH with a positive attitude.
It empowered me to focus on things I love, like traveling, socializing, exercising, and advancing my career. And it prompted me to remember that my PNH doesn’t define me. I’m in the driver’s seat.
After working on myself, I turned my focus to the PNH community. It is so rare that few people can relate, let alone understand, what it’s like to live with PNH. I felt it was my responsibility to leave the world better than I found it and be a resource for everyone at every age. So, I started speaking on panels, participating in walks, raising money, and helping to increase awareness of PNH. I found my voice and advocated for my community, hoping that I can guide others the way others guided me.
I know what it’s like to feel alone and confused, but it’s important to remember that you’re not alone. There’s a great community out there and, we’re all here for each other.
I encourage you to find your own voice, stay positive, and tackle this disease head-on. We only have one life, so let’s live it for us.
The above represents a real person living with PNH, telling their story in their own words. This individual was compensated by Apellis for the time required to share their story. Every person’s experience with PNH is unique. This story does not include individual treatment or medical advice. You should speak with your doctor about questions you may have about PNH, its symptoms, and treatment.