Rare Reflections: MPNs Unmasked

Author: Voices of MPN

Incyte presents Rare Reflections: MPNs Unmasked, a program 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.

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.

For an interactive experience, enter the virtual gallery to view the illustrations up close and read the powerful stories of people impacted by MPNs. Click on each portrait to learn more and turn up the volume to hear Jones’ inspiration behind each illustration.

Be sure to keep checking back for updates!

Click the button to read more and view the illustrations.

Image of JG Jones Image of JG Jones

J.G JONES

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.

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.

Image of David Image of David

David G.

I found educating myself about the disease, finding the right doctor and surrounding myself with a strong support system have allowed me to live each day to the fullest.

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.

Image of Summer Image of Summer

Summer G.

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

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.

Image of Lea Image of Lea

Lea F.

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.

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.

Image of Runnette Image of Runnette

Runnette S.

We all experience different struggles in life, but what matters is the proactive steps we take to help overcome them.

From a young age, there have been two constants in my life: an understanding of how precious and fragile life is and a passion for singing.

When I was born, the doctors noticed I had a hole in my heart, and I have experienced countless health problems since, but I never allowed these obstacles to overcome my belief that with a positive attitude, my faith, and the support of my family, I was prepared to overcome whatever life threw at me.

Then I began to experience strange symptoms, including brain fog, fatigue, and itching. While I tried to brush them off and attribute them to stress or menopause, they persisted. I could no longer hide some of my symptoms. Singing began to feel like a chore. In the Church choir, I found myself unable to finish songs due to shortness of breath. Yet, after a visit to the emergency room, I was told I was likely just working too hard and was given the “all clear” to go home.

These inexplicable symptoms went on for several months, and I grew more and more fatigued. One day, my husband awoke and knew something was wrong. When he came down to the kitchen that morning, instead of finding me dressed for work and cooking us breakfast, he found me still in my pajamas and hunched over the counter from fatigue. This was the tipping point. “Emergency room or urgent care?” he asked.

At the urgent care, I was ordered to visit the hospital emergency room. After what seemed like a never-ending day, I was stabilized and released. I followed up with my primary care physician who took a blood test that revealed an elevated hematocrit. Soon after, I went to a hematologist who officially diagnosed me with polycythemia vera (PV), a rare, chronic blood cancer that is part of a group of blood cancers called myeloproliferative neoplasms (MPNs).

Although I had experienced health obstacles before, this was different. Not only did the word “cancer” scare me, but to make matters worse, because it is a rare disease, I didn’t feel like I had a full understanding of what I was diagnosed with. I was just handed an educational packet to learn more and that was it. The most terrifying part was the doctors were unable to give me a proper prognosis, because of the lack of information about PV at that time and my prior heart problems. Not knowing what the future held led to feelings of depression and anxiety. I became so withdrawn that I even stopped singing.

A critical moment for me was when I came across MPN patients sharing their stories online. It inspired me to create a Facebook group so I could share my story and connect with others living with MPNs. It was therapeutic to be able to connect with others and to have a platform to share my story with my family and friends to help them understand what I was going through. Even more importantly, I found support through my husband. Whether he is by my bedside during low moments in my PV journey or at the doctor’s office with me prepared with a list of questions, I know I couldn’t do it without him.

I’ve encountered a lot of unexpected twists and turns on my journey but am proud to say I have found hope and happiness through my faith and through music, and have regained my positive outlook on life despite my condition. We all experience different struggles in life, but what matters is the proactive steps we take to help overcome them. Whether I am singing in the choir alongside my husband or visiting nursing homes where I sing and share my story, I find comfort in knowing I found the strength to rediscover my voice.

Image of David Image of David

David S.

After a decade of caring for Linda and offering my emotional support, her disease had become our disease.

I’ve always believed in the sanctity of my wedding vows, especially the part about “in sickness and in health.” That’s why when the health of my wife, Linda, took an unexpected turn, I knew without reservation that I needed to care for her.

Our love story began almost 30 years ago. At the time we met she was in the middle of creating a support group for children in her church and community who were struggling with stressful issues, such as divorce or alcoholic parents. I was instantly drawn to her selflessness and dedication to helping others. And, I knew she was my forever.

We spent our first date writing a Sunday lesson for a singles group and have been inseparable ever since. No matter where our work or our passions have taken us— everywhere from Russia, to Kenya and throughout the United States—we have moved as one. When you spend all your time with someone, you become attuned to them. So, it struck me as odd when Linda began to feel extremely fatigued, weak and dizzy immediately following a relaxing vacation in Mexico.

At my insistence, Linda saw her doctor, who did routine blood work that showed an extremely high blood count and immediately referred her to an oncologist. He officially diagnosed her with polycythemia vera (PV), a rare, chronic blood cancer that is part of a group of blood cancers called myeloproliferative neoplasms (MPNs). Like everything else, we started this new health journey side by side. I took on the role of Linda’s primary caregiver and health advocate and made a promise to her that I would do everything in my power to support her. My first step was to educate myself about PV to help me make informed decisions about her health.

The journey has not always been smooth—there have been some bumps in the road along the way, but we were always able to overcome them together. Then, Linda’s PV transformed into myelofibrosis (MF), another type of MPN, and she was given a three-year prognosis. The news terrified and devastated us. I’ve always used both logic and my faith to find answers to problems in life, but as we desperately searched for solutions, my mind was blank.

After a decade of caring for Linda and offering my emotional support, her disease had become our disease. The new diagnosis didn’t change this. I didn’t accept the doctor’s grim prognosis and took it upon myself to learn as much as I could about MF—just as I had done with PV. I drove her to every doctor’s appointment and played an active role in answering questions and making health decisions alongside Linda. I also took on the household duties—including daily chores such as cooking or cleaning. I welcomed the challenge, knowing it would allow Linda to focus on her own health and well-being. Over time, I began to see a light at the end of the tunnel once again.

Whether I’m volunteering, leading support groups, or now, caring for my wife, a constant in my life has been supporting and helping others. My advice to people experiencing a similar health issue with a loved one is to learn as much as you can about what they are going through. I also found it important to avoid over-sympathizing and to keep a positive sense of humor in your relationship without minimizing the situation. Finally, don’t feel guilty if you need some time alone or time to focus on your own physical and emotional well-being—it is as important for a caregiver to stay healthy as it is for the person they are caring for.

The bond between a caregiver and patient is truly unique. The ups and downs we have experienced have brought us closer together in a way that I didn’t think was possible, and I look forward to continuing to walk through life next to Linda, with our hands clasped as one.

Image of Jim Image of Jim

Jim

Being diagnosed with PV wasn’t part of my game plan, but similar to coaching, when something unexpected happens you can’t just throw in the towel.

When I was starting out as a basketball coach, I went to hear coaching legend John Wooden speak, and he said, “a good coach can change a game. A great coach can change a life.” Hearing this, I knew I found my calling.

I spent over 40 years as a high school coach and teacher and am grateful for the time I got to spend with my children, who attended the school where I taught, as well as with players and students who became like my extended family. When you do something every day for that long, you get into a routine, but I learned the hard way that nothing in life is guaranteed. Almost eight years ago, I was teaching a class and the entire right side of my face and body went numb. My daughter – who happened to be a student in that class – noticed something wasn’t right and texted the school nurse. When class was over the nurse was waiting for me and took my blood pressure. One look at the results and she recommended I go to the emergency room immediately.

In the ER, the doctor on call wasn’t sure what was wrong with me but had a hard time getting a vial of my blood for a test because it was so thick. He told me that there was a hematologist in the hospital who was teaching about myeloproliferative neoplasms (MPNs), a group of rare, chronic blood cancers, and asked if I’d like to see him. Before I could think twice, my wife shouted “yes” loud enough for the both of us. After running blood tests, the doctor diagnosed me with polycythemia vera (PV), which is a type of MPN.

You would think a diagnosis like that would have slowed me down. It didn’t. Because, due to my health, I had missed the basketball game that would have been my 500th win as a coach, I was determined to attend Senior Day, an important milestone for any coach which marks the last home game of the season. I went – against the wishes of my family and doctors – but promised I wouldn’t coach. However, for those who haven’t coached before, trust me when I say it is nearly impossible to watch your team play from the sidelines and not jump in and start coaching, which is exactly what I did. Being back on the court that night was an amazing feeling, which made it easy to miss the looks of concern on the faces of my family.

The next day, the right side of my face and body went completely numb again. This was a wakeup call for me, and I knew I had to start listening to my family and my doctor.

Creating a New Game Plan

I made my health my number one priority and began to advocate for myself in any way I could. I’ve also been extremely lucky to have the support from my family, including my daughter who was in the classroom on the day that led to my diagnosis, and is now a nurse. Thanks to her, I’m focused on maintaining a healthy lifestyle and have someone to help me at my doctor appointments. Prioritizing my health allowed me to coach for an additional eight years following my PV diagnosis. But in 2019, things changed again.

I was seeing my doctor regularly and still working as a coach and teacher – but managing my PV became another full-time job. I knew that in order to continue to focus on my health, I had to step away from coaching and teaching. It was a tough decision; however, I knew I had to rest and address my health issues to make a real change. The same day I announced I would retire after my 30th season, I suffered a heart attack and was diagnosed with pneumonia. I felt a sensation of loss as it dawned on me that I would be ending my coaching career sooner than expected.

I felt as if my whole life and career were taken away, and PV became my identity. I felt alone, even though I was surrounded with support from my family and friends. However, I was contacted by a gentleman who had been living with PV for years and was familiar with my PV story. Being able to speak with someone who understood how I felt and what I was going through made me realize that although I had a new challenge to face, I shouldn’t give up on my future or lose myself to PV. Ever since then, the identity of “PV Patient” faded, and I reclaimed my identity as a dad, son, teacher, and coach.

One of the most important things I learned from my diagnosis is to be in tune with your body and how you feel. Before being diagnosed, I experienced migraines, extreme fatigue and night sweats, but didn’t acknowledge the symptoms as anything other than stress. If your body is telling you something, listen to it and take action. I also continue to see my doctor, who is an MPN specialist, on a regular basis to manage my health and PV.

Being diagnosed with PV wasn’t part of my game plan, but similar to coaching, when something unexpected happens you can’t just throw in the towel. You have to take a breath, acknowledge the challenge, and even if you have to adjust your plan, keep moving forward. By telling my story, I hope to help other patients understand that they are more than their disease and a diagnosis doesn’t define them.

Image of Charles Image of Charles

Charles

Going through this experience has taught me that the most important part of life is the quality of each day, and I’m dedicated to making each one better than the last.

I’ve always loved history, and I’m especially interested in the experiences of people who have been left out of the textbooks, whose history isn’t reflected in the museums. Because of this, I have always pushed to educate myself about marginalized populations. Through my work as a history professor and at local museums, I’ve challenged students to do the same. Yet, I never imagined my passion would become even more personal, until I was diagnosed with a rare and often misunderstood blood cancer known as polycythemia vera (PV).

It all began in 1995 when I was finishing my master’s and starting my Ph.D. I began to experience unexplainable symptoms such as fatigue and night sweats. I went to my general practitioner assuming I would leave with a concrete answer, but instead I was told that the symptoms were due to the stresses of graduate school. This became the common refrain from different doctors I saw throughout the years until I suffered a heart attack in my early 30’s. Afterwards, I went to see a cardiologist who noticed my blood cell count was high. I had a bone marrow biopsy, and soon after was diagnosed with PV, which is one of several myeloproliferative neoplasms (MPNs), a group of rare and progressive blood cancers.

Because MPNs are a rare disease, little was known about them at that time. Even though I finally had a concrete answer about my symptoms, without the ability to learn more about PV, I still felt in the dark about what was happening in my body and what to do about it. I suddenly felt as if I was part of a marginalized community – just like the ones that I always aimed to educate others about – except there didn’t seem to be anyone working to shed light on my condition or offering knowledge to other patients with MPNs. This left me feeling overwhelmed and isolated. I began to slip into a deep depression, which translated into drinking.

The drinking started to have an impact that rivaled my other health challenges, and instead of worrying about my disease, I found myself worried about my problems with alcohol. My search for help led me to others who shared my experience, and they become my community. Their support helped me come to terms with alcohol abuse and helped me see that I needed to start caring about myself.

Learning a New Lesson

As if a rain cloud had disappeared from above my head, my world started to become a bit brighter. My focus shifted from worrying about the future and things I couldn’t control, to focusing on the quality of each day. Approaching life one day at a time, I started doing activities that made me truly happy. This, I realized, meant working with and surrounding myself with other people. I started taking cooking classes and attending comic book conventions. Most importantly, I turned my focus back to teaching – both in the classroom and through work at local museums – sharing lessons from history through the eyes of women, immigrants and people of color.

I also joined online communities and met others living with MPNs. Besides finding comfort and a sense of belonging in these new relationships, I was also directed to reliable educational resources I could access on my own. With the same passion that I have for learning about history, I began to learn all I could about MPNs in order to make informed choices about my health. I also found a doctor who is an MPN specialist, and through my learning I’m able to have informed discussions and collaborate with him on my disease management.

While the support of my doctor and fellow MPN patients has made a tremendous impact on my life with PV, it’s my husband, Alan, who holds the most extraordinary role. We met each other long after my diagnosis, and he sees me as me. Because I am proudly my own health advocate, I rely on Alan to just enjoy life with me. I have found it important to have someone who is cognizant of the fact I have a disease and is accepting of that fact, but doesn’t treat me as a patient. He is there for me unconditionally, and he’s the first person to make me laugh if I’m feeling down and the only person who is not afraid to tell me if I’m taking myself too seriously.

While I have endured the highest ups and lowest downs since being diagnosed, I am grateful for all I have been through. In the past, I was quick to put things off and spent so much time thinking about the future that I forgot about the present. Going through this experience has taught me that the most important part of life is the quality of each day, and I’m dedicated to making each one better than the last.

Related Articles

Card image cap
"Something So Rare" Documentary Sheds Light on Life With an MPN

Author: Voices of MPN

READ ARTICLE
Card image cap
Turning Up the Volume on MPN Education

Author: Voices of MPN

READ ARTICLE