Explore these everyday stories from people living with PNH
PNH can change many aspects of your life. For me, one of the big ways was my work. I found that living with PNH made it too difficult to maintain my career. Luckily, I had a strong support system in place that helped me realize that didn’t mean there wasn’t a career path that fit my needs! I ended up changing careers, and learned few things along the way.
Setting long term goals is important.
I really didn’t want PNH to hold me back from what I wanted to accomplish. But I also knew that my original goals were no longer realistic. So, I thought about where I wanted to be in the future, and brainstormed ways to get there while being mindful of my limitations.
Research alternate career paths. Think about completely new careers. Or maybe just find a way to adjust your current job in a way that allows you to be both successful and manage your PNH. It’s okay to want a career that accommodates your PNH needs. Sure, it can feel daunting at first, but if you don’t know where to start, there are resources out there that can help, like career coaches and counselors.
Make sure you’re talking to your doctor
as you go through this process, too.
Tell them what you want to do and why you want to do it. Make sure they’re comfortable with the goals you’ve set and work with them to create a plan to help you get there. Having that plan in place can help you both stay on track.
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.