CHELSEA P.

ABOUT

Diagnosed with polycythemia vera (PV) in 2018, Chelsea’s symptoms have affected the two things she loves most in life: caring for her young daughter and performing as a professional country music artist. At times, she was unable to pick up her daughter or remember the lyrics to her own songs. She also found it difficult to explain to her loved ones how this condition affects her. Chelsea hopes collaborating on The Unseen Journey project will help those closest to her better understand what she goes through every day.

CHELSEA P.

Chelsea, a young blonde woman with polycythemia vera, poses in front of an AI-generated image of a guitar in a field Chelsea, a young blonde woman with polycythemia vera, poses in front of an AI-generated image of a guitar in a field
Chelsea, a young woman with polycythemia vera, speaks about how AI helps her visualize her symptoms Chelsea, a young woman with polycythemia vera, speaks about how AI helps her visualize her symptoms

Imagine that you are a singer about to start a concert. As the crowd chants your name and the spotlight shines on the stage, you suddenly forget the words to your own song. 

Chelsea lived this moment. Unexplained bouts of brain fog, along with other symptoms like headaches, bone pain and itching, compelled her to see a doctor and seek answers. A series of unusual blood test results taken over a couple years ultimately led to Chelsea’s diagnosis of PV, a type of myeloproliferative neoplasm (MPN), in 2018.

“You have days where it gets really cloudy and feels unbearable. And then you get into the light.”

An AI visualization of polycythemia vera symptoms, showing guitar in a field of flowers An AI visualization of polycythemia vera symptoms, showing guitar in a field of flowers

While working with Incyte on The Unseen Journey project, Chelsea described times when she felt alone in her MPN journey. She said that she often struggles to articulate how she feels because her symptoms can be so complex. From the outside, her friends saw a new mom and touring country musician who looked healthy. While her husband JP understood that she struggled with her MPN symptoms, he could never fully grasp what she was living with every day.

With a team of generative artificial intelligence (AI) experts listening behind the scenes, Chelsea explained that her symptoms affect the two things she loves being the most: a mom and a musician. She shared that her brain fog has made it difficult to perform live in front of crowds or even concentrate on daily tasks around the house. There have been times when she was overcome with excruciating bone pain, making it impossible to pick up a guitar or even hold her daughter. Some nights, she felt a burning sensation so strong in her hands and feet that she had to sleep with cold towels covering herself. These details served as inspiration for AI-generated imagery that portrayed what it is like to live with her MPN symptoms.

When Chelsea saw the images that her stories brought to life, she immediately noticed how they seemed to reflect her good days and bad days. The experience was also eye-opening for JP who, after years of listening to Chelsea describe how she felt, gained a deeper understanding of the ways Chelsea’s MPN symptoms impacted her.

Although she still struggles with her symptoms, Chelsea works closely with her health care team and has a strategy in place for tracking and managing her symptoms. After sharing her story for The Unseen Journey, she now has a way to show JP and her friends and family how her MPN symptoms truly affect her. With the love and support of her family, Chelsea is eager to continue making music and share her experience in the hopes it will inspire others living with MPNs to talk to their doctors about how their symptoms are affecting their daily lives.

Recognizing your symptoms starts with you

A person holds a smartphone displaying the MPN symptom tracker app

You are the key to noticing your symptoms so that they can be managed. So be honest with yourself. That means talking about all of your symptoms because any one of them can affect your quality of life. If you have any symptoms, it is important to tell your healthcare provider, as this could mean that your disease is progressing. So don’t wait and start tracking your symptoms.

Track Your Symptoms
A person holds a smartphone displaying the MPN symptom tracker app