The Unseen Journey: Bringing MPNs to Life with Generative AI

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Like countless busy parents juggling family responsibilities, when Ben began experiencing unexplained symptoms – such as headaches, fatigue and brain fog – he initially pushed them aside. Clarity only came when a physical exam for a new job uncovered something was wrong.

Ben’s tests revealed he had an unexpectedly high platelet count. A bone marrow biopsy confirmed that he was living with essential thrombocythemia (ET), a type of myeloproliferative neoplasm (MPN) that causes the body to overproduce blood platelets, which can lead to blood clotting. Ben and his family were surprised by the diagnosis, but it also provided the answers they’d been searching for.

For years, Ben’s symptoms made it difficult to work, often finding himself distracted by headaches, and struggling to find the right words due to his brain fog, which prevented him from communicating quickly and clearly with those he managed. In the evenings, night sweats and itching made him “want to climb out of his skin” with discomfort, making it difficult for him to sleep through the night.

Coming to terms with his MPN diagnosis was difficult. For Ben, family has always come first. He spent his weekends slinging hay on his brother’s cattle ranch. When he wasn’t enjoying the outdoors, Ben and his wife supported their kids in school, music lessons and sporting events. Once, while helping his brother on his ranch, Ben’s fatigue forced him to lie down in the middle of a pasture to recover. He also found it hard to stay awake after dinner, making it difficult for Ben to be the present father and husband he wanted to be. “I was missing out on time with my wife and sons while I was stuck on the couch,” Ben explains. “I could never get that time back. I knew I had to do something.”

Ben decided to switch to a new medical practice to get a better handle on his symptoms. His new care team uncovered that his ET had progressed into myelofibrosis (MF), another type of MPN which can develop over time. Through informed conversations with his team, Ben learned new tools to keep track of his symptoms, including taking careful notes about his care. He credits his family for helping him to stay on track and his wife who always reminds him “to share information that I would minimize or otherwise forget about.”

Always motivated to help others, Ben shared his experience living with an MPN with Incyte as part of The Unseen Journey. The initiative brings to life the physical and emotional toll of MPN symptoms through generative AI imagery, created from the words and experiences of people like Ben, living with MPNs.

As Ben spoke about his experience living with his MPN, a team of generative artificial intelligence experts turned his words into immersive visuals depicting his symptoms. Through The Unseen Journey program, Ben hopes to educate others about the different types of MPN symptoms to watch out for, encouraging people to proactively identify and track their symptoms, and to have regular conversations with their care teams.

Ben credits his family for helping him advocate for himself with his MPN care team, and encourages others to do the same, “With the support of my family and help from my team of doctors, I’ve found ways to better manage my MPN. Now I can fully enjoy spending time with the people I love and look forward to summers boating on the lake and helping my brother on the cattle ranch. I want others living with an MPN to understand their diagnosis doesn’t mean they have to watch life pass them by. If people are proactive and advocate for their health, they can still grab life by the horns.”