RAISING MPN AWARENESS ONE CONNECTION AT A TIME

RAISING MPN AWARENESS
ONE CONNECTION AT A TIME

 

RARE REFLECTIONS: MPNs UNMASKED

Author: Voices Of MPN

Incyte presents Rare Reflections: MPNs Unmasked, a campaign focused on raising awareness of and educating about myeloproliferative neoplasms (MPNs). Incyte has partnered with J.G. Jones, a renowned illustrator who was diagnosed with an MPN over a decade ago, to capture the experience of those impacted by MPNs.

Rare Reflections features a series of portraits by Jones, who uses graphic art to reveal the powerful and personal stories of individuals impacted by MPNs.

“I am excited to partner with Incyte to shine a light on MPNs by doing the work I know and love. I hope through increased awareness and education about MPNs, I can help foster connections within the broader MPN community and give a voice to those who may feel unheard or alone,” J.G. said.

Keep checking back for additional updates and illustrations—Incyte and J.G. will be working together over the next several months to feature additional stories from those impacted by MPNs.

Click the + button to read more and view the illustrations.

For as long as I can remember, drawing has been my way to invent something new, to live in the amazing world of my imagination, and to sometimes even escape reality. Although I feel as if I have lived hundreds of lives through all of the characters I have created, I never felt less like myself than I did in 2009. For several years I was having strange symptoms I didn’t understand – reaching a point in my day to day where I was falling asleep while working at my drawing table and waking up hours later with the pencil in my hand. When I blew a big deadline on a project, I figured I should start listening to my body to get a handle on what was going on. When I went to get a physical, my doctor noticed something odd in my blood work and sent me for additional tests.

While I knew something was wrong, I wasn’t expecting a diagnosis of polycythemia vera (PV), a rare, chronic blood cancer that is part of a group of blood cancers called myeloproliferative neoplasms (MPNs). It was a scary diagnosis, but it was also a relief: I could finally take control of my health, and I immediately began to educate myself about MPNs, which empowered me to take an active role in the management of my disease.

While this condition has been one of my life’s biggest challenges, I make a point to grow from it each day. I have a new perspective on life that I’m not sure I would have gained without going through this experience. I’ve decided to stop putting things off and get rid of the narrative that something can wait to be done another day.

As part of the Rare Reflections: MPNs Unmasked campaign, I’m looking forward to helping other people living with an MPN tell their powerful and personal stories in order to shine a light on this rare disease. Through their stories and my art, I hope this campaign will empower others to play an active role in their disease journey and connect with others in the MPN community who share their experience.


For as long as I can remember, I’ve been an active person. I ran my first marathon in 1979, and I’ve run about 50 since. After the high of running in the 100th anniversary of the Boston Marathon with my son, I turned to biking.

One day in February 2016, I was riding my bike through my favorite park in Winston-Salem when my right handlebar got caught on a gate that I’d ridden through hundreds of times. I was propelled forward and ended up with a broken femur that required immediate surgery.

While I was preparing for the procedure, the orthopedic surgeon expressed concern about performing the operation because my blood cell counts were “bouncing off the ceiling,” and he wasn’t sure why. While this was a red flag, I desperately needed the surgery to fix my femur, so we went through with it. Following the surgery, I made it a point to prioritize my health so I could recover as quickly as possible. The easiest part of my recovery was physical therapy – I had a clear problem and a clear solution. What took a bit more digging was what was causing my elevated blood cell counts. After bouncing from doctor to doctor and still not finding an answer, I was finally referred to an oncologist who diagnosed me with polycythemia vera (PV), a rare blood cancer.

While surprised, I was determined to manage my health and learn as much as I could about PV. Around the time of my diagnosis I was in the middle of writing my third novel, but immediately switched gears to focus on taking control of my personal story by educating myself about the disease, finding the right doctor and surrounding myself with a strong support system.

I recently finished my third and fourth novels, am back to biking daily and continue to exercise and stay active. Although I sometimes experience shortness of breath while working out, I don’t allow myself to lose my determination to live a full and complete life. Whether biking, writing, or just taking life one day at a time, I only look forward to what adventures lie ahead. We all are on a different journey and our paths can change in an instant, so keep your eyes on the road ahead and don’t look back.

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