Explore these everyday stories from people living with PNH
It’s been 11 years since I was diagnosed with PNH, and so much has happened in those 11 years. I’ve grown as a person and learned to be more resilient around the challenges my PNH presented, and I’ve gained gratitude along the way. I know this journey can be difficult, so I want to share some of the questions and struggles I faced, and how I dealt with them, in the hopes they might also help you.
Did my identity have to change?
After being diagnosed, it was very important for me to do everything in my power to get my life back on the path I was on, pre-diagnosis. I was very focused on not letting my PNH stand in the way of what I wanted, whether that was getting back to playing football or attaining my career goals. But it quickly became evident that there were some things in my life that were going to be permanently changed, but that this was okay.
Although it took time for me to accept it, I realized that it wasn’t about forgetting who I was pre-diagnosis, but rather embracing who I had become on the journey through living with PNH and not allowing PNH to hold me back from creating the life I wanted/deserve.
I tried to view PNH simply as a detour but
knew that my destination was unchanged.
PNH had become a part of my identity, but it didn’t define me. It was difficult, but ultimately, I
embraced my new identity.
How could I evolve my perspective while remaining true to who I am?
Along the lines of embracing a new identity, I had to make sure that I also evolved my perspective about being diagnosed with PNH. Instead of focusing on PNH, I began to focus on myself. I focused on my wants, needs, and goals. It took time and was not easy to come to these realizations but doing so has only strengthened me.
My resiliency and ability to overcome adversity got stronger. I had newfound humility and empathy that improved the relationships in my life. All of this was made easier by leaning on the support of my family, my doctors, and even the PNH community.
This is not a journey that needs to be taken alone, I
found there’s a large community of supporters willing
to help if you’re willing to let them in.
Learning I had PNH was difficult, but I tried my best to not let it prevent me from living my life, and instead have used it to help create a new, positive chapter in my life. No matter how your perspective changes, it’s important to remember that there is plenty of life and hope after a PNH diagnosis.
What was the thing that would keep me going?
Living with PNH is not just about coping and surviving in my opinion, I believe you can work to achieve everything you wanted to achieve pre-diagnosis. It’s easier said than done obviously, and may not be possible in every instance, but I found that focusing on my passion helped me move through more difficult times. When I say I identified my passion for life, I don’t necessarily mean a hobby or activity.
It’s more about finding the motivation to continue to improve yourself and your health. For me, it was staying athletic, but it will be different for everyone. Maybe it’s a person, family, hobby, career – anything that inspires you to continue to push forward with your life and not allow PNH to consume you and stop you from achieving your long-term life goals.
By sharing my PNH journey, I hope to inspire others to find your own inner strength and learn to lean on others for support to help you make it through the more difficult times so you can work toward living the life you want and deserve.
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.