Sharing my PNH story has led to more opportunities to share

A new video collaboration with Novartis has helped me in my outreach

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by Brandi Lewis |

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Your story is your superpower!

I’ve heard this statement so many times, but didn’t fully understand it until I began sharing my own story. Since 2008, I’ve battled two blood disorders: aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). In the beginning, I was focused only on my health so that I could return to my normal life.

Now that I write that last sentence out, I laugh — because nothing, since that moment in 2008, has been normal. It’s been 15 years since my aplastic anemia diagnosis and seven since my PNH diagnosis, and I feel as if I’ve entered a different chapter of life. I’m still consumed with making doctor appointments, managing my symptoms, and navigating a new normal, but with that comes the ability to help others through sharing my experience.

I’m thankful to say I’ve partnered with many companies that are shining a light on my rare blood disorders, giving me the opportunity to share my message of resilience and hope. The authenticity of my story shows others that life is worth fighting for.

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A video image shows a young black woman right of center. She appears to be in a fenced playground. The text reads "BRANDI'S PNH STORY," and below that, "A Personal Narrative of Hope," with the P, N, and H in orange and the rest of the type in white.

A still from the Novartis video of Brandi Lewis’ PNH story. (Screenshot via

This year I was asked to share my story with Novartis, a pharmaceutical company. It flew in a team of videographers to my home in Birmingham, Alabama, and used local people for my video shoot. It even provided me with my own trailer, stylist, and wardrobe options. I had people making sure I was well-fed and hydrated. I felt like a queen for the day!

It was an all-day event with two shooting locations: one at a house and the other in my neighborhood park. The final video was released this month, and I’m so happy with how it turned out.

I’m always asked how I get opportunities to share my story. I have a hard time answering this question because it’s my passion to help others. If you want to know how to share your story, here are 13 ideas that helped me.

13 tips to share your story

  1. Find your passion through the pain.
  2. Let go of the fear!
  3. Build relationships with others who are going through similar situations.
  4. Write down all of your ideas.
  5. Act on your dreams and goals.
  6. Know that nothing is impossible.
  7. Be curious.
  8. Listen and learn from others.
  9. Use social media to spread your message.
  10. Know that followers and “likes” don’t determine success.
  11. Surround yourself with like-minded people.
  12. Establish boundaries around how much you’re comfortable sharing.
  13. Don’t be afraid to reach out and possibly hear the word no.

When I found my passion to help others like me by hosting bone marrow and blood drives and visiting college campuses to share my story, my “job” began to grow. The deeper I fall into my passion, the more outreach I receive to help another person.

Do what you love and share your message to inspire that next person.

Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.