Published Feb 29, 2024

The Unseen Journey: How the Hidden Symptoms of a Country Singer’s and a Former Football Champ’s Rare Blood Cancer Come to Life Through Generative AI

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Sponsored by Incyte

The Journeys of Two People Living with Myeloproliferative Neoplasms

Myeloproliferative neoplasms, or MPNs, are a group of rare, chronic blood cancers in which a person’s bone marrow does not function properly.¹
For people living with MPNs, symptoms can be subtle, hard to assess and are often mistaken for stress or aging when they could be a sign of disease progression.²
Through the power of generative artificial intelligence (AI), we can now see The Unseen Journey of people living with an MPN and the symptoms they experience.
You can learn more about the inspiring stories of country musician Chelsea, former football champion Mickey and others living with MPNs at TheUnseenJourney.com.

Picture yourself as a singer warming up for your next gig, when suddenly, you forget the words to your own song. This was the experience of country music singer Chelsea. Brain fog and other unexplained symptoms like headaches, bone pain and itchy skin began to take over her ability to perform, compelling her to see a doctor in search of answers. It took several years and countless doctors visits, but in 2018 after a series of unusual blood test results, Chelsea was diagnosed with polycythemia vera (PV), the most prevalent type of MPN.

MPNs are a group of rare, chronic blood cancers in which a person’s bone marrow does not function properly. They are progressive diseases, meaning they can worsen over time. The three most common MPNs include PV, myelofibrosis (MF) and essential thrombocythemia (ET).²

Chelsea’s PV symptoms affect the two most important areas of her life — her music career and caring for her young daughter, which has been very challenging for her to cope with. She has also found it difficult to explain to others how her PV affects her on a daily basis. “The comment I hear most often is, ‘Well, you look so good on the outside.’ But people don’t know how I feel on the inside. Sometimes, it feels like my body is breaking,” Chelsea shares.

For Mickey, a former football champion and retired pharmacist who was also diagnosed with PV in 2018, symptoms of fatigue and night sweats changed the way he experienced life but left his friends and loved ones in the dark. Anyone who knows Mickey would describe him as energetic, positive and caring. But more and more, he found his energy depleted by symptoms that were unseen and hard to describe, making it difficult to be present in the lives of those he loves and cares most for. “The thing that a lot of people don’t realize is we can look healthy on the outside but that doesn’t tell people how we’re doing on the inside,” he explains.

Seeing The Bigger Picture

Fueled by a desire to share their experiences and help others, Chelsea and Mickey partnered with Incyte on The Unseen Journey, which highlights the stories of people living with MPNs. This initiative brings to life the physical and emotional toll of MPN symptoms through generative AI imagery created from the words and experiences of MPN patients.

As Chelsea and Mickey spoke about their experiences, a team of generative AI experts worked behind the scenes, transforming their words in real time into captivating images that depict their MPN symptoms and hidden disease journeys.

Fatigue as described by Mickey through generative AI

“I struggle to describe what my experiences with fatigue are like, both physically and emotionally. It can take over quite unexpectedly, causing me to labor through an evening with friends that I’d otherwise be enjoying wholeheartedly.” – Mickey

Brain fog as described by Chelsea through generative AI

“I really struggle to describe brain fog. It’s like I’ll try to think of what I need to do, but I can’t remember anything. I feel stuck. I can’t think and there’s no way around it.” – Chelsea

Night sweats as described by Mickey through generative AI

“Waking up to drenched bedsheets caused by night sweats isn’t uncommon for me, but the experience I had with my wife on a cruise is ingrained in my mind. It caused so much embarrassment and led to a day of extreme fatigue.” – Mickey

Through The Unseen Journey program, Mickey and Chelsea hope to educate others about the different types of MPN symptoms to watch out for, encouraging people to proactively identify and track their symptoms and have regular conversations with their care teams.

To learn more about MPNs and the importance of tracking symptoms, visit TheUnseenJourney.com.

1. Leukemia & Lymphoma Society. Myeloproliferative Neoplasms.
www.lls.org/sites/default/files/National/USA/Pdf/Publications/MPNs_booklet_12_17_FINAL.pdf
Accessed December 2023.
2. Leukemia & Lymphoma Society. Myeloproliferative neoplasms (MPN) research funded by LLS.
https://www.lls.org/research/myeloproliferative-neoplasms-mpn. Accessed December 2022.

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