I’ve been learning to live with PNH for about a year now. As I started to navigate the healthcare system, I considered how PNH might affect my future.

Below are a few ideas that I found useful.

Create a trusted partnership

When I was diagnosed, I decided I was not going to rely on the internet for medical information. Because PNH is a rare disease, I ask my doctors a lot of questions. They’ve been honest, respectful, and compassionate when giving me answers and addressing my concerns. Just as I need to trust my physicians, it’s equally important that they can trust me. For example, I once took a prescription incorrectly and didn’t realize it until I needed a refill. It was embarrassing to admit my mistake, but my doctors were very understanding and appreciated my honesty. They were able to take the error into account when evaluating my lab work and developed a plan to quickly get me back on the proper regimen.

Open up about your whole journey

I’ve been open with my healthcare providers about what life was like before my diagnosis, what it’s like now, and how I see it going forward. We discuss ways for me to continue doing things I’m passionate about, like working out and traveling. It’s also been helpful to have friends and family members meet my doctors. It helps them gain a better understanding of what I’m going through, and gives my doctors better insight into who I am and why I’m so motivated to not let PNH stand in the way of my life aspirations.

Foster teamwork

I’ve found a great deal of support from all members of my healthcare team, especially nurses, pharmacists, physician assistants, lab techs, my hematologist, and my PNH specialist. Because they each play a specific role in my care, they’ve been able to offer useful tips from different perspectives. The more information I’ve gathered from trusted professionals, the more empowered I’ve felt.

Proactively communicate

I have always wanted to visit Iceland, but I wasn’t sure it would be possible with my PNH. I sat down with my doctors to see if they thought the trip would be possible, and not only were they supportive, they were also nearly as excited for me as I was! Because I shared my plans several months in advance, we were able to adjust treatment and lab appointments and create a plan that would allow me to take my “bucket list” trip. It was the best feeling in the world to stand on top of the third largest iceberg in the world and breathe in the fresh air. I am so thankful that the extra planning and coordination I did with my doctors enabled me to experience such a great joy in my life.

Everyone’s journey with PNH is different, and that can make it feel lonely at times. While learning about PNH and figuring out the healthcare system can be daunting, and setbacks do happen, I choose to look at all the steps forward I’ve taken and how much I’ve learned.

Knowledge is power, and teamwork is key in not letting PNH stand in your way. Wishing you all the best!