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.

My husband, Jeff, and I approach life a bit differently—I am more spontaneous and he’s more of a planner. It’s always been that way. Over 20 years ago, when he was my new boyfriend, I told him I had a dream of owning a theater. His reply was, "stick with me and you will." Two years later, Jeff and I found a location and built our very own theater. Today, we’re running the North Park Vaudeville theater out of that same old salon and have produced almost 600 short, brand new plays from around the world. Our theater is also the home of the STARS acting program for people with disabilities.

Jeff and I do so well together because we are two different halves of the same puzzle—between us, we always have all of our bases covered. This has worked in our favor as we’ve navigated the obstacles life has thrown at us—including unexpected health challenges.

In 2018, a doctor I saw for a physical sent me to the ER because she thought my bloodwork was so alarming. While there, the resident on call ran some blood tests which showed my blood cell counts were abnormal and called an oncologist to take a look at me. The oncologist—who was a specialist in myeloproliferative neoplasms (MPNs), which are a group of rare, chronic blood cancers—took a few more blood tests and a bone marrow sample and formally diagnosed me with myelofibrosis (MF), which is a type of MPN.

For Jeff and me, my diagnosis carved out new roles: patient and caregiver. Our strong personalities helped shape our new roles—I focused on the mental aspect, while Jeff, ever the planner, focused on the medical and educational aspect.

This diagnosis weighed on my typically positive mental state. I stayed up for nights thinking of how to cope with MF and emailed an old comedy teacher and asked if any of his students had ever done a comedy routine about cancer. He wrote back, "if they have it, they do," and I went to his stand-up class the next day.

In my 20 years performing, I have only been nervous about getting on stage once—and that was the first time I performed a comedy routine about my MF diagnosis. With Jeff behind the curtain cheering me on, I gained the courage to get onstage and open up about my experience. Following the show, I had people coming up to me to thank me and tell me that I inspired them. For the first time, I felt as though I had regained control of my disease journey.

For me, using humor to share my feelings and experiences has been the most important part of my journey. Being diagnosed with a disease like MF, it’s easy to feel something else is controlling you. Turning my story into humor and expressing myself through comedy was a way of showing that this disease doesn’t define me, and I can still enjoy the parts of my life that bring me happiness.

While the laughter helps both of us get through some hard times, Jeff’s knowledge about my condition and his support are the most important parts of coping with my diagnosis.

With rare diseases like MPNs, there tends to be a lack of information or reliable resources for patients and Healthcare Professionals alike. Immediately following my diagnosis, Jeff turned to the Internet to learn the ins and outs of MPNs and continues to keep himself up to date on the latest research and science today. Jeff is a retired pilot and flew for over 50 years, and because he had continual flight training and education, he was never afraid to fly and was prepared to handle anything that he might encounter while in the air. He has the same approach when it comes to my MPN diagnosis—fear comes from a lack of knowledge.

He also found joining online support groups was vital in coping with his new role as a caregiver. Although every MPN journey is different, hearing from other patients and caregivers who are going through something similar gives him a sense of relief.

Although Jeff and I have different approaches to life and how to manage my MPN diagnosis, we both advocate for living in the moment and staying positive. I know I couldn’t do it without him. Whether he is backstage cheering on a new comedy routine, educating himself about MPNs, or coming to all of my doctor appointments prepared, he has always been there for me—just like he was 20 years ago.

Whether you have an MPN or are a caregiver, living with this condition can be challenging. But I urge you to stay informed and educated on this disease. Everyone deals with this diagnosis differently, so whether it’s through education, support, or in my case, comedy, it’s important to face your disease head on and know you are more than a diagnosis.

December is one of my favorite times of the year—being able to celebrate the holidays with family and friends with the excitement of starting a new year. But December 2018 did not go as planned. I had a serious allergic reaction while out at dinner and was admitted to the hospital. The doctors conducted routine blood work and were surprised at the results – my hemoglobin, hematocrit and platelets were extremely elevated. They sent me to a hematologist for more testing and a bone marrow biopsy. The day after Christmas, I was diagnosed with a rare blood cancer called polycythemia vera (PV). I was only 28 years old.

I was shocked. Especially because PV, which is part of a group of rare, chronic blood cancers known as myeloproliferative neoplasms (MPNs), is more common in adults over 60 years of age. While hearing the word “cancer” terrified me, I couldn’t help but feel thankful. If I hadn’t gone to the ER for something completely unrelated, who knows when I would have been diagnosed.

For years before my diagnosis, I experienced itching after hot showers, migraines and fatigue – all of which are symptoms of PV. However, when I expressed my concern to doctors, I was told these symptoms were due to hormones, from working too much or not getting enough sleep. If only I’d known then what I know now, I would have sought out a second opinion.

In the last year, I have suffered life-threatening complications resulting from PV. My health has become my number one priority. I have learned as much as I could about MPNs and have surrounded myself with a team of doctors who are familiar with my health history and who are experts in the MPN field. I have a team in place now that I’m comfortable with and feel lucky to have working with me – that is the most important thing I have learned through this journey; to educate yourself, find a doctor that’s right for you and to always advocate for your own health.

In addition to my business career in technology, I am the artistic director of a nonprofit dance company for those who have been dancing and love performing but are not professional dancers. It’s fulfilling to see people who are passionate and connected to dance – but who chose a different career path – get to perform together onstage. Being part of a community with similar experiences and interests has always been important to me.

When I was diagnosed with PV, I worried I wouldn’t be able to find a community because it is such a rare condition. I wanted to meet others who could really understand what I was going through, so I started to share my story on social media. I was instantly greeted with a wave of responses from my family, friends and even from strangers who were empathetic because they or a loved one were going through something similar. Sharing my story online was also how I met my fellow “MPN Warriors” – which is my MPN support group in Pittsburgh. I now attend monthly MPN support meetings and even bring some of my friends and family to them every now and then.

Being open about my experience has made me feel as if I am confronting my disease instead of hiding from it. It has not only been important to my health, but it has also been a way to educate my friends and family about MPNs.

My PV diagnosis was the ultimate surprise, and I felt as if I had lost control. But dancers are taught courage and discipline because everyone falls sometimes. We just have to get back on our feet and stay strong.

Today, I stand firm by facing PV head on and educating myself and others about MPNs. As I continue to share my own journey, I hope to inspire others to find their voice, share their stories and help our MPN community feel heard.

SHARE THIS LINK
Share

Share an MPN Awareness Badge. Show your support and promote
myeloproliferative neoplasm(MPN) awareness. Share a badge through socail media
with your friends and family. #MPNAAwareness

No Thumbnail
Create A PIN
Board

Share an MPN Awareness Badge. Show your support and promote MPN Awareness!
#MPNAAwareness

No Thumbnail
Thank You For Visiting.

You are now leaving www.VoicesofMPN.com and being directed to a third party Web site. Incyte is not responsible for the content of the site you are about to visit.

Would you like to continue?
Thank You For Visiting.

You are about to leave the PV Tracker Tool. Do you want to continue?

Thank You For Visiting.

You are about to leave this page without saving your information. Are you sure you want to continue?