PNH can feel daunting. The physical and emotional impact of PNH can hinder your ability to do what you love. But even though PNH may feel impossible, a life full of possibilities still exists. Over the past few years, I learned three things that helped me get more out of life than I thought would be possible when I was first diagnosed.

PNH can take a toll on your body. Take time to really think about what is most important to you, and then see if your PNH symptoms are preventing you from fully enjoying those things. Doing this not only helped me identify where my PNH has held me back, it has also helped me find the support I needed to enjoy more of the things I value the most.

I’ve also found that partnering with your doctor can help you get through a lot. I developed a great relationship with my doctor and can openly discuss if and how PNH impacts my daily life. By being open and honest with my doctor, we were able to work together to figure out how best to monitor my energy levels and how I’m feeling. Having this in place and knowing my doctor is there for me is a huge relief. And I regularly check in, so we’re always on the same page in terms of my goals and treatment.

The last thing I learned is why I should set goals and celebrate small wins. Early on in my diagnosis, I was afraid to do things I used to enjoy because I was worried about developing additional PNH symptoms.

I began to push myself to do more of the activities I enjoyed. I started small, but quickly realized I was actually able to do more than I previously believed I could. Learning to acknowledge and celebrate these victories has helped motivate me to continue to strive to do more and not let my PNH get in the way.