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About The Purple Chair

The Purple Chair

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Meet Chuck, Donna, Mark, and Tami, 4 inspiring individuals who share their emotional journeys with a rare, chronic blood cancer. The Purple Chair series explores their collective experiences, from diagnosis through to the discovery of a path forward with Jakafi—the first FDA-approved prescription medicine for adults with intermediate or
high-risk myelofibrosis (MF) and the first FDA-approved prescription medicine for adults with polycythemia vera (PV) who have already taken a medicine called hydroxyurea (HU) and it did not work well enough or they could not tolerate it. Find out what became possible for them—and explore what may be possible for you.

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In The Purple Chair

What do these 4 patients with PV or intermediate or high-risk MF have to say from The Purple Chair?

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How Our Journeys Began

How does it feel to learn that you have a rare, chronic blood cancer?

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Finding a Path Forward

Can asking questions lead to self-advocacy?

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Discovering the
Power of Partnership

Who says experience is everything?
They do.

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Reflecting on the Possibilities

How did exploring their treatment possibilities change their perspectives?

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We Are Not Alone

How can connecting with others help inform the journey ahead?

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Meet Our Storytellers

Chuck, “The Advocator”

Taking Jakafi for PV Since 2020


It was important for me to not just trust the doctor, but to also advocate for myself about what was going on in my body. I’m the CEO of my medical team.”


After a routine physical in 2014 revealed elevated red blood cell counts, Chuck’s primary Healthcare Professional sent him to a specialist for further evaluation. At the time, he didn’t think it was anything serious. That is, until he realized he was being referred to an oncologist. Weeks later, after several appointments and a positive test for the JAK2 mutation, Chuck was diagnosed with polycythemia vera (PV). He was told that it was a rare blood condition that could be managed with phlebotomy. The word cancer never came up. Chuck accepted what he was told and didn’t ask too many questions.

After about 5 weeks of phlebotomies, Chuck was started on hydroxyurea (HU), which he took for years, despite suffering various side effects. During this time, he consulted with a number of Healthcare Professionals, hoping to find someone with experience treating PV. A little more than a year after his diagnosis, Chuck finally connected with a hematologist who confirmed that PV was, indeed, a rare, chronic blood cancer. That’s when things finally clicked in his mind—and he knew it was time to become a more informed and vocal advocate for his own care, starting with getting the facts about what was going on inside his body.

Chuck began doing more of his own research. He started asking more questions during medical appointments. He also joined several online PV support groups and attended online medical webinars. As he began taking a more active role in his own care, he also started noticing and keeping track of how his disease was changing—and communicating those changes to his care team. This enabled Chuck and his Healthcare Professional to take action when his spleen became enlarged.

One day, while doing online research, Chuck came across information about Jakafi. All-too-frequent phlebotomies—along with ongoing HU side effects—led him to consider the possibility of making a change. So, he did his research. He asked questions. He even discussed it in his support groups. And in 2020, his Healthcare Professional prescribed Jakafi. Since starting treatment, his blood counts are well controlled, and he has not required any more phlebotomies.

As an Ambassador for Jakafi, Chuck hopes to inspire others to become educated and empowered advocates for their own care.

Donna, “The Communicator”

Taking Jakafi for PV Since 2020


I'm now on the path to possible because I was on a path to impossible.”


As a former public speaking teacher Donna had always been a great communicator. She had a lifelong passion for acquiring knowledge—and an enthusiasm for sharing it. That’s why, in her retirement, she became a motivational speaker for the education sector. Ironically, however, she had been keeping quiet for several years regarding growing concerns about her own health.

In December 2019, after noticing a trend of irregularities in her blood counts, she finally motivated herself to speak up. She reached out to her Healthcare Professional, who confirmed that further evaluation was needed. Donna was referred to a hematologist/oncologist, who then sent her to an MPN specialist. She was officially diagnosed with polycythemia vera (PV) in April 2020. She had never heard of PV before and immediately began educating herself about her new health status.

Initially, Donna’s PV was treated with phlebotomy and hydroxyurea (HU). Unfortunately, she spent several months struggling with severe HU side effects that made it nearly impossible to complete her motivational speaking obligations. She reached out to her Healthcare Professional to set up time to discuss her other treatment possibilities. That’s when she learned about Jakafi and consulted with her Healthcare Professional about taking her PV journey in a different direction.

After making the switch to Jakafi, Donna’s HU side effects resolved and her blood counts have stabilized. She has been able to return to her motivational speaking duties and credits Jakafi with helping to make that possible. She has been taking it since 2020.

As an Ambassador for Jakafi, Donna hopes to motivate other patients and caregivers to understand the importance of self-advocacy and ongoing healthcare communication. She also hopes to inspire others to discover what may be possible with Jakafi.

Mark, “The Coach”

Taking Jakafi for Intermediate-Risk MF Since 2017


I just said I'm just going to tackle it. I'm going to live life.”


As a social worker and youth sports coach, Mark always had a passion for community service and helping others. That’s why, after he was diagnosed with intermediate-risk myelofibrosis (MF) in 2017, he decided that he was going to use his own experiences to help inspire and support other patients and caregivers.

Mark’s journey actually began in 2013, after symptoms of bleeding, burning/tingling extremities, and itching after showering led to an unexpected diagnosis of polycythemia vera (PV). For 2 years, he managed his condition with a strict regimen of phlebotomy, aspirin, and dietary changes. However, during a routine physical in 2017, the clinician observed that his spleen had become enlarged. He was immediately sent to the hospital for further evaluation. Additional testing confirmed that his PV had transformed into MF.

Having always been an active sports buff, Mark knew that certain aspects of his current lifestyle would need to change—especially with regard to contact sports and potential spleen injury. However, never one to shy away from a challenge, he knew that somehow, he would find a path forward.

Mark committed to learning as much as he could about his MF diagnosis, including his treatment options. Together, he and his Healthcare Professional decided to explore what was possible with Jakafi.

Since starting Jakafi in 2017, Mark’s symptoms and spleen size have improved. Today, he continues to provide youth coaching, but does his best work from the sidelines.

As an Ambassador for Jakafi, Mark hopes that his story can help inspire others to become informed advocates for their own health journeys.

Tami, “The Forward Thinker”

Taking Jakafi for High-Risk MF Since 2015


I said... I'm going to find out a way to move forward… I was going to take charge again.”


After suffering through decades of increasingly severe migraines, a 3-day-long episode in 2011 finally prompted Tami, a licensed mental health professional, to seek medical attention. However, she was unprepared when her urgent care visit ultimately led to a diagnosis of essential thrombocythemia (ET). Always one to look on the bright side, she allowed herself one good cry before concluding that self-pity wasn’t going to help. Instead, she was determined to find a positive path forward.

Despite her upbeat attitude, Tami’s condition eventually began to worsen. After 4 years, she began suffering from debilitating bone pain and night sweats, in addition to ongoing fatigue and a feeling of fullness that affected her ability to eat. She felt powerless to manage her symptoms and feared that she might require an assisted living facility.

Still determined to find hope, Tami partnered with her Healthcare Professional to reevaluate her current treatment—and her diagnosis. That’s when she learned that her ET had transformed into high-risk myelofibrosis (MF). She also learned that her spleen had become enlarged. With a new diagnosis, Tami also discovered new treatment possibilities, including a promising path forward with Jakafi.

After taking Jakafi, Tami’s MF symptoms have significantly improved. Her spleen has stopped increasing in size. She is also now able to enjoy hiking and being outside in nature. She has been taking Jakafi since 2015.

As an Ambassador for Jakafi, Tami hopes that her story of perseverance and positivity can help other patients find hope and possibility.

We’re Saving a Seat,
Just for You

Your story could help educate and inspire others. Learn how you can join a growing network of Incyte Mentors by becoming an Ambassador for Jakafi.

Discover if Jakafi
Is Right for You

Explore helpful materials to guide you on your journey with Jakafi.