Explore these everyday stories from people living with PNH
Shortly after my PNH diagnosis, I realized pretty quickly that my life would be different. I would have more doctor visits, be on treatment, and have a new set of limitations to get used to. Faced with this new reality, I think a lot of people withdraw from their lives. Not me, though. I decided early on that I wouldn’t let my PNH limit my ability to be social.
I was not going to let my PNH prevent me from spending time
with family and friends and making lasting memories.
Here’s what I did…
I built a strong support network
Early in my journey, I knew it was going to be important for me to have a strong support network. So, I didn’t hesitate to allow my friends in. I shared my diagnosis with them, helped them learn about PNH, and found ways they could help me during my journey. They have been an integral source of strength and support for me. And I’m so grateful for that because I have always been a social person and need that in my life. I’ve been able to maintain strong friendships and a network that encourages me and supports me even to this day – 8 years after being diagnosed!
I got creative with social plans
While it’s always been a priority for me to socialize with friends, my PNH symptoms has made that challenging at times. I’ve learned that I need to be flexible and creative when making plans. I always go back to my original goal of not letting PNH stand in the way of me living the life I want. On the days I’m not feeling well, my plans with friends may look different. We might have video calls instead of going out. Or my friends might come over instead of all of us going to a large gathering that could exhaust me. I have come to realize I need to be open and set expectations in order to not completely cancel my plans. Remember having PNH doesn’t mean we need to avoid socializing altogether, we just modify our plans sometimes.
I called on the experts
If you notice you are having to regularly alter or cancel plans due to your PNH symptoms, let your doctor know. It’s important they understand how your PNH is impacting you physically, socially, and emotionally so you can work together on how best to address it. I do this all the time because remaining social and having a strong network of support is important me, and I know my doctor is a crucial part of helping me keep it a priority.
All in all, what I’ve realized is that it’s important to identify
what matters to you most in life, then prioritize it and
advocate with your doctor to get more of the life you want.
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.