After living for years with aplastic anemia, Brandi Lewis found out that she also had paroxysmal nocturnal hemoglobinuria (PNH). Over time, Brandi learned how to research and advocate for herself to get the care she needed. Watch the video to see how Brandi overcame hurdles, becoming an activist raising awareness about blood disorders, and to get tips for taking charge of your own PNH diagnosis.

Below are four tips from Brandi for living with PNH.

1. Define Your PNH Diagnosis in Your Own Way

The moment Brandi found out she had aplastic anemia, she chose to take control of her story rather than letting the diagnosis define her. This attitude continued after she was diagnosed with PNH, too.

“I must say that it gave me a very amazing view on life and really living life to the fullest,” she said. “That really, truly means I ended up writing down a list of goals and things that I wanted to do.” PNH could have stopped Brandi in her tracks, but she chose to keep moving forward in her own way.

2. Empower Yourself by Spreading Awareness

Brandi turned her experience into action, using any position or opportunity to help others understand her medical condition: “I became Miss University of North Alabama. I was able to use my platform in order to spread awareness.”

“I am very big on advocating for yourself, whether that means getting a second opinion, changing doctors if you need to, in order to make sure that you’re getting the best treatment for you.”

— Brandi, a myPNHteam member

This happened before she knew she had PNH, but anyone with a serious diagnosis can find empowerment and meaning by helping people understand what it means to live with their medical condition.

3. Do the Research

Understanding PNH can give you confidence that you know what’s going on with your body and what you need to say to your doctors. The knowledge helps you stay in charge of your own health, rather than placing it entirely in the hands of others.

“I always stress to people that are just starting out with PNH, do the research,” Brandi said. “If you don’t feel comfortable doing the research for yourself, have somebody else do the research for you.”

4. Advocate for Yourself

If you understand PNH and how it affects your body, you’re in a good position to get the best treatments for you. This often means talking to health care providers, asking probing questions, and doing whatever it takes to ensure you get the right care.

As Brandi put it, “I am very big on advocating for yourself, whether that means getting a second opinion, changing doctors if you need to, in order to make sure that you’re getting the best treatment for you.”