Explore these everyday stories from people living with PNH
Fostering a deep connection with your doctor
A constant theme throughout my 13-year journey with PNH has been connections – forming partnerships with the PNH community and my healthcare team. For 12 years, I was fortunate to have the same physician assistant (PA). She was my go-to person and taught me everything I needed to know about PNH. The bond I formed with her had a lasting, positive impact on my life.
As I reflect, I’m so grateful for our relationship. She always looked out for me, researching PNH resources and seeking me out in the office even if I wasn’t on her appointment list. She taught me a lot about myself, encouraging me to be confident and strong while handling the daily life challenges of PNH.
As a teacher myself, I understand the impact someone can have on your life.
She made me feel seen and understood – in big and small ways. For example, she always asked what was new with me from a health and life perspective. She was interested in getting to know me – Brianne the person, not Brianne someone with PNH. She wanted to learn more about my life goals and how PNH may or may not be impacting them. She made sure she was doing everything she could to support me.
My PA also taught me how to be my own advocate, learning to listen to my body and reach out when something felt off. I could email her and she would make time for me. I’ve always been strong, but even the strongest individuals need support. She taught me how to overcome setbacks and to use my “voice” to advocate for what I needed when I wasn’t feeling well or my PNH symptoms prevented me from doing things I enjoyed.
She knew I wanted to live life on my own terms and encouraged me to strive for what I wanted in life.
When my PA moved, while I was happy for her, I was also crushed. This was one of the first times in my PNH journey that I truly felt alone. But I didn’t wallow in it. Instead, I took what I learned from her and started to rebuild my healthcare team, using the bond we had as a blueprint. I’ll forever be grateful for her, and our partnership will be a constant source of inspiration for me. I hope by sharing my story, I can inspire others to forge a similar kind of connection with members of their healthcare team.
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.