The Power of Voice in MPN Management

Patients with myeloproliferative neoplasms (MPNs) should be actively involved in understanding their disease and communicating specific needs and concerns to healthcare providers, an expert said.

Kathryn Johnson, clinical program manager for the MPN and leukemia programs at the Icahn School of Medicine at Mount Sinai in New York, was honored at the MPN Heroes® in-person ceremony in December 2024 for her work in clinical trials in the space.

Johnson’s nominator noted that throughout the last five years, she has witnessed her dedication to providing care for patients with MPNs, while connecting them to the resources they need and advocating for them with insurance companies.

“Kathryn works with patients undergoing experimental treatments, often a daunting time filled with uncertainty,” her nominator wrote. “Yet, her presence brings an immediate sense of calm and reassurance, helping patients feel that everything will be OK.”

CURE also spoke with Johnson to learn more about how patients can lean into their care teams and trust them so that conversations about symptoms and side effects can be held in an effective manner.

Transcript:

Speak up. Especially with MPNs, you know, they do all manifest differently. There are things that we know that people have in common, but they're going to present differently for every person. And I think that there's a lot that people learn to grow with that they don't always realize is impacting them. So taking a good look at who they are, what their goals are, is going to be helpful to managing their care and making sure that they're vocalizing things that aren't sitting right.

And then also [I] always encourage bring a buddy, bring a sister, bring a parent, bring a spouse, bring an adult child, the people who love you, love you and support you and want to help you manage this that you're going through.

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