The Unseen Journey Brings to Life the Impact of MPN Symptoms on Patients’ Lives
For people living with myeloproliferative neoplasms (MPNs), a group of rare, chronic and progressive blood cancers, the symptoms of their disease can be subtle and hard to assess. Sometimes these symptoms, such as fatigue, night sweats and headaches can be mistaken for stress or aging when they could be signs of disease progression.
Each person’s experience is unique, and people living with MPNs often struggle to track their symptoms and communicate the impact they have on their lives to their friends, loved ones and healthcare providers.
Incyte launched The Unseen Journey to support people living with MPNs by elevating awareness of common symptoms and encouraging proactive identification, tracking and discussion. For the program, people living with MPNs were asked to describe the emotional and physical impact of their symptoms in their own words. As each patient spoke, generative artificial intelligence (AI) tools were used to transform their words into images that help patients express the hidden reality of living with an MPN through vivid illustrations of the significant impact of their symptoms.
I was diagnosed with polycythemia vera in 2018. Some of my most prominent MPN symptoms include fatigue, night sweats and itchy skin. Prior to my diagnosis, I minimized my symptoms or chalked them up to aging. That’s why I’ve partnered with Incyte on The Unseen Journey program. The images created of my symptoms captured how my symptoms make me feel, and I hope this initiative will help others living with MPNs express their experiences with loved ones and their care teams in a way they couldn’t before.
“I remember getting out of the shower and my back was itching so badly, I literally rubbed it against the doorframe until some of the wood came off. But still couldn’t get any relief.”
“My night sweats start right before I go to bed. My neck gets all sweaty. My hair gets wet. And overnight I’ll wake up a few times and feel how soaked the bed is. I’ll take the covers off and feel cooler, but I’m sweating.”
“It almost feels like my ideas are restricted in this container, behind frosted glass, and I can’t get to them. It’s in between me and what I want to communicate.”
“There are times where I have no energy. I want to get up and leave the house, but I’m so tired and feel so weighed down that I can’t do anything.”
“My head feels like it’s in a huge building that’s on fire. It’s painful and dark. I feel trapped inside, like there is no way out.”
To view the MPN patient stories and see how the AI-generated images were created, visit TheUnseenJourney.com.
Patients have been compensated for their time and participation in this program.
