Anyone who knows Mickey would describe him as energetic, positive and caring. The former college football champion and retired pharmacist liked to keep himself busy traveling with his wife Nancy, trying new hobbies, or organizing reunions with his old teammates. But more and more, he found his energy depleted. He figured his symptoms were just old aches from his college football days but the truth was, there was more going on than he realized.

After receiving some unusual results from a blood test, Mickey was referred to an oncologist who diagnosed him with PV, a type of myeloproliferative neoplasm (MPN), in 2018.

What’s made this experience particularly difficult for Mickey is that his friends and loved ones would see him and think he looked healthy on the outside. He struggled to explain how his PV was truly affecting him, because his symptoms were unseen and difficult to describe.

When Mickey collaborated with Incyte on The Unseen Journey project, he shared some of his most memorable symptom experiences. While on a cruise with Nancy, his night sweats left the bed so drenched that he stripped the sheets himself out of embarrassment, hoping the housekeeping staff wouldn’t notice. When friends visited him, he had a hard time staying awake to enjoy their company. His itching could be so bothersome that he’d rub his back vigorously against any wall he could find just to achieve temporary relief.

As Mickey spoke about his experiences, a team of generative artificial intelligence (AI) experts worked behind the scenes, turning his stories and descriptions of his PV symptoms into captivating AI images.

When Mickey saw the illustrations that his words had created, he was in awe of how the images conveyed exactly how he feels. And when Nancy saw the images, she better understood what living with these symptoms is like for him, both physically and mentally. Mickey was particularly excited about the potential for other people living with MPNs to have a way to capture and ultimately express their experiences with loved ones and health care teams in a way they couldn’t before.

Since his diagnosis, Mickey has worked with his care team to implement a disease management plan that has helped him resume many of the things he loves. Today, he and Nancy are back to traveling, and he is once again able to enjoy reunions with his football teammates.

As an advocate for the MPN community, Mickey encourages others living with an MPN to track their symptoms and talk to their care teams. With his contribution to The Unseen Journey, he hopes to help educate others about the different types of MPN symptoms to watch out for. As he says, “People living with an MPN don’t have to be defined by it. Life goes on, and I want to help others become more aware of early symptoms so it might encourage them to seek the help they need.”