Explore these everyday stories from people living with PNH
my whole self
For as long as I can remember, I have been on the go. I am a doer. I measured my success through how much I could accomplish in a day and how many items were checked off my to-do list.
This strategy worked for a long time. I graduated summa cum laude from college, earned a master’s degree in physical therapy, and began my career. I got married, and we bought our first house. We worked to make home improvements and save for our next home. Then, in 2011, I had my first experience with the unpredictability of life. Our son, Grady, was born with a rare genetic syndrome called trisomy 9 mosaic. He spent 50 days in the neonatal intensive care unit, and then we brought him home amidst a myriad of questions, concerns, and upcoming medical appointments.
Our son’s medical diagnosis only cemented my process of doing. I had a massive list of therapies, meetings, and medical appointments to attend.
In my mind, there was no time for anything else. I did not think about my wellness at all. I only thought of my son.
In 2019, I was diagnosed with PNH and that forced me to take a good, hard look at my life and learn how to reprioritize myself. With this diagnosis came the knowledge that I needed to spend more time thinking about my own health. This was less related to my physical health, although that’s important, and more about my emotional well-being. This was a big shift for me, as emotional wellness was something I had never really thought about before, let alone prioritized.
My diagnosis forced me to think about my mortality and ability to live with a chronic disease without feeling sorry for myself on a regular basis. Of course, I still have days when I feel sorry for myself, but that is not how I want to spend the time I have on this earth. So, I needed to make a change. This change first involved an acknowledgment of the emotional component of my health and wellness and its impact on my life.
Because I am a doer, learning to prioritize my emotional wellness became something I added to my to-do list. Now, I regularly schedule time to meditate, take a walk, or simply stop and take a few deep breaths.
I set reminders on my phone so that I can emotionally check in with myself and see how I’m feeling throughout the day.
I know that if I didn’t have these reminders or this time set aside in my days to focus on my emotional health, it wouldn’t happen.
I have learned to accept my diagnosis (even though I still don’t like it) and have found much more peace in this way of living than I ever would have imagined. Emotional wellness is something I will continue to prioritize in my life because I know how important it is and how much better life can be when we focus on the WHOLE of ourselves – body, mind, and spirit.
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.