Blood Cancer Awareness Month is a chance to inform and inspire

One Sunday morning in March a few years ago, as the world remained in lockdown due to the COVID-19 pandemic, I answered my phone and heard my son ask if I’d seen the latest edition of The New York Times. I pulled it up online and there, on the homepage, was a piece with my byline, an Editor’s Pick.

Years earlier, I had regularly contributed to the newspaper, but this was the first time I’d written a first-person story — my story about living for nearly three decades with a myeloproliferative neoplasm (MPN), specifically, myelofibrosis (MF).

That day, it wasn’t the prominent Sunday byline that made my heart swell. It was the hundreds of comments posted on the website; the outpouring of gratitude that my personal story would help them explain their chronic cancer to others.

Recommended Reading

Aug. 26, 2026 by Margarida Maia, PhD

FDA accelerated approval sought for myelofibrosis combo therapy

The question is, why did I put myself out there so publicly? And why do I continue to do so today?

I believe I have an opportunity to offer hope to others who are led to believe that their diagnosis, or that of a loved one, is a death sentence, whatever the rate of speed. I believe I can make a unique contribution to help raise awareness about MF, a rare disease that is often misunderstood and misdiagnosed.

My work as a science writer might help people who don’t have my privilege of access to MPN/MF specialists with firsthand knowledge about the newest, potentially better, and more individualized treatments. With outdated data about treatments and prognosis very visible on the internet, this is more important than ever.

September is Blood Cancer Awareness Month

As September creeps into our calendars, it’s a good reminder of how essential it is to continue to build awareness and understanding around MF. It’s the best way to allow our family and friends — and even our care teams — to be more aware, and therefore more supportive, of our challenges, both emotional and physical.

The reality is that most people are used to acute cancers and gratefully putting the conversation around “The Big C” in the rearview mirror when treatment is successful. Chronic cancers like MF are different. We can live “well” for several decades — all the while undergoing active treatments.

Most of us affected by MF simply live our best life in ongoing treatment to help with symptoms or complications, or with the hope of preventing disease progression. Even people who have undergone a stem cell transplant often have complications and require maintenance therapy.

If you’re living with MF, September can offer a reminder that even the family, friends, or co-workers closest to you may not know much about the condition or how it can affect you at different times. They may have heard “blood cancer” and never moved beyond the associated, terrifying fear.

• This Blood Cancer Awareness Month, you have the opportunity to increase awareness in as small or broad a circle as you’d like.
• You can provide fact-based insights on how quickly the MF treatment landscape is changing; how research and clinical trials are advancing at lightning speed; how prognosis data they may read is based on old information that hasn’t caught up to newer medication options.
• You can choose to talk more about MF generally or your own experiences. And you can choose to be more open with just a close group of loved ones or take every opportunity to scream from the proverbial rooftop through social media.

Whatever choices you make will be the right ones for you, at least for now.

When I pitched the Times editor my story back in 2021, I had been struggling with severe fatigue. Just a year earlier, I remember my voice breaking when I said I simply wanted the energy to dance at my son’s upcoming wedding.

By the time the piece was published, I was one year into a life-changing clinical trial that today (after more than six years on a new combination drug therapy) continues to make me feel like my old self again.

When I sat down to write the essay, it was September, the first time I was aware of a global Blood Cancer Awareness Month. I knew exactly what I wanted to accomplish from my very first words, as they traveled from my head to my keyboard. I wanted to educate and empower others through my storytelling.

“I have a rare chronic blood cancer.”

“I am a poster child for hope through clinical drug trials.”

“I will dizzy myself silly dancing on my toes at my son’s pandemic-postponed wedding.”

I have. I am. And I did.

Note: Myelofibrosis 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 another 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 Myelofibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myelofibrosis.