Explore these everyday stories from people living with PNH
Finding strength and inspiration through a PNH peer
Throughout my life, relationships have always been a priority for me. I’m fortunate to have a strong support system with my family and friends, who’ve helped me on my 13-year journey with PNH. Even with this level of support, I’ve still maintained a strong sense of independence and determination. I refuse to say “can’t” for just about any challenge or obstacle that comes my way. However, I’ve learned I can’t do this alone. Being determined and having the support of family/friends wasn’t enough for me.
I needed to find and connect with other people that had PNH so I could learn from their experiences.
It took me 3 years to take the first step in meeting others with PNH and start going to luncheons and conferences. There was no reason it took me this long, other than I didn’t think I needed anyone to guide me through my PNH journey. This is where the fiercely independent part comes in – I thought I could do it all on my own.
My patient advocate encouraged me to share my story and be an ally for others living with PNH. I started with baby steps – by attending PNH-related conferences/events – and that grew into a few speaking engagements. Through this experience, I received a great gift in that I could see first-hand how sharing my journey inspired others. I also made a life-long friendship with a fellow PNHer.
I met her at a luncheon, and we instantly became friends. We both love the outdoors and socializing with family and friends. We also share the same common goal of not letting PNH stop us from living life on our terms. She validated how I was feeling and helped me persevere through obstacles in my own life by sharing how she worked through challenging times without letting her PNH define her.
To this day, we remain each other’s biggest supporters. She attends my annual PNH research fundraiser, and I watch her PNH speaking engagements.
We have a unique, life-long bond, and I know I can overcome any challenge with her in my corner.
Making these connections with the PNH community took time, and I’m grateful that I made the effort. I hope by sharing my story, I’ll inspire others to be open to the possibility of fostering connections in the PNH community and finding someone who can be a source of strength and inspiration.
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.