Brandi Lewis wants others to know that a diagnosis of paroxysmal nocturnal hemoglobinuria (PNH) isn’t the end of the story — for her, it was the start of a new chapter. “I’ve been on this journey for over 14 years now,” she told myPNHteam. “I feel like I’ve learned a lot. Now, I’ve tackled a lot in order to help other people.”

Starting her mornings with gratitude helps Brandi face the day. Her symptoms include fatigue, which means it can take her a few minutes to get out of bed. PNH can lead to anemia (low levels of red blood cells), which causes fatigue and lack of energy. In some cases, the symptoms are mild, but this condition can also make it hard to keep up with daily routines.

One caregiver on myPNHteam shared, “My companion really struggled this past week with severe fatigue. I understand that this is normal but wish there was something I could do to help him more.”

“I feel like I’ve learned a lot. Now, I’ve tackled a lot in order to help other people.”

— Brandi, a myPNHteam member

Even with her fatigue, Brandi said, she is “thankful to be here, to be alive.” After getting out of bed, she has a cup of coffee, and then she gets ready for her workday.

Along with having fatigue, Brandi experiences brain fog, which can pose an additional challenge at work. One way she stays on top of things is by taking notes: “I always have a notepad by my desk where I’m just writing things down.”

In the years since her diagnosis, Brandi has learned the importance of taking care of herself physically and mentally. She’s intentional about incorporating rest and relaxation into her daily routine. “Stress is not good for PNH,” she said.

To keep stress levels in check, Brandi takes a midday break to have lunch and listen to calming music. “I take that hour … to give myself a mental rest break,” she explained.

Brandi is dedicated to sharing what helps her manage life with PNH, and she hopes to inspire others with the same illness. She travels around the country to speak about her experience with PNH, and she writes blog posts describing what it’s like to have symptoms such as fatigue and brain fog.

Now Brandi is launching a podcast about persevering through difficult circumstances, whether the challenge is a serious diagnosis, a loss, or another type of unexpected hardship. She is committed to finding the good even in difficult situations and wants to share her message with others.

“You have a life to live,” Brandi said. “You are going to get over this hurdle, and you’ll look back and say, ‘I did that.’ I found out how to battle something, and I did it.”

Members of myPNHteam echo Brandi’s sentiments and take the same approach. “When things first began it was scary and confusing,” one member reported. “I remained determined, studied [the disease], and learned a lot.”

Watch the video to learn more about how Brandi tackles fatigue and brain fog with PNH.