Dr. Janeana White: When a physician becomes a patient
At first, Dr. Janeana White didn’t think much of the fatigue that began slipping into her days. With long, irregular work hours as a physician and the nonstop pace of parenting, it was easy to tell herself this was simply life — the natural shift that comes with moving out of her 40s and into a busier season. But what started as tiredness became something more disorienting, a kind of exhaustion that made getting out of bed feel impossible. “If someone could just lift me by the shoulders,” she remembers thinking, “I could get going.”
As the fatigue deepened, her clinical instincts kicked in. She knew better than to diagnose herself, yet the questions began lining up in the back of her mind: Could this be chronic fatigue syndrome? Anemia? Something with my thyroid or nutrition? Because the symptoms appeared in quiet waves, not every day, not always dramatic, she postponed making an appointment with her provider, staying dedicated to her patients and family.
After many candid conversations with the people she trusted most, Janeana realized it was time to prioritize her own health. “I’ve learned from very respected colleagues, that it is important to prioritize taking care of yourself because if you can’t care for yourself, you can’t care for your patients.”
When her clinician reviewed her bloodwork, the thyroid panel raised enough concern to begin a referral to endocrinology. Her platelet count was also slightly elevated, but not dramatic enough to draw attention. “When you have inflammation, for a whole host of reasons, your platelets can elevate. As an internist and pediatrician constantly around sick children, that explanation felt reasonable at the time.” And so, she followed the endocrinology path for about 6 months — searching for answers that still didn’t fully explain her exhaustion.
It wasn’t until Janeana was able to review more than a year’s worth of her electronic medical records, that a pattern came into focus. Her platelet counts hadn’t been slightly elevated just once, they had consistently been out of range. This broader view helped her ask better questions and work with her provider to redirect her care toward the right diagnosis. “If I were to have hunkered down and stayed with ‘It’s the thyroid that’s the problem,’ I would have lost perspective on the bigger picture.”
When her clinician referred her to a hematologist for more specialized testing, it was meant as a precaution, to rule out anything serious. However, to the surprise of both Janeana and her provider, she tested positive for the JAK2 mutation — an important finding consistent with essential thrombocythemia (ET). It was an answer she wasn’t anticipating, but one that finally offered a clearer explanation for the months of escalating fatigue. She was put on aspirin and has felt better since.
In the days that followed, Janeana did what came naturally to her as both a physician and a patient: she sought information. That search led her to MPN Research Foundation, where she found the tools and resources to deepen her understanding of her new diagnosis and strengthen her communication with her care team.
She became part of the Foundation’s Patient Engagement Advisory Committee (PEAC). The committee plays a key role in guiding the MPN PROGRESSion Registry™, a new patient-powered initiative designed to help researchers better understand how and why myeloproliferative neoplasms (MPNs) — including essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF) — change over time, to ultimately improve patient care and outcomes.
“Where I was in my career and life, I realized silence in many spaces is not the answer. Where can voices be heard? And there was a call to participate [on this committee]. It’s been a real opportunity to connect and learn more.”
The community within the PEAC and MPN PROGRESSion Registry quickly became one of the most meaningful parts of her journey. “The PEAC community has been helpful because I get to hear other people’s [MPN] journeys.” she says, “When I hear somebody say their counts were ‘like a million,’ I think how that could have been my story if I have waited, tweaking my thyroid medication and tolerating not feeling completely whole and well.”
Knowing that these blood cancer symptoms live on a spectrum of severity, she listens closely to how one patient’s path can lead to one treatment algorithm and another patient’s path to something entirely different. It gives her perspective and options if her own journey ever changes.
For Janeana, connection is the word she returns to most — connection to information, to community, and to the reassurance that she’s not navigating this disease alone. “One of the reasons I joined the PEAC,” she says, “is to give others a perspective of hope and encouragement and meet them where they are.”
She knows how meaningful it can be to have a trusted place where you can explore research‑backed information privately, at your own pace, and bring what you learn back to your care team with confidence. And she believes deeply in the power of contributing to something that will help the next generation of those living with MPNs.
“It may feel scary at first,” she says, “but build those connections and spread awareness.”
If you feel ready, consider adding your voice to a greater movement like MPN Research Foundation’s MPN PROGRESSion Registry™. Your experience could help someone else find clarity sooner, just as the community helped Janeana.
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis. It does not represent the views or opinions of anyone associated with MPN Research Foundation. Please consult your doctor before taking any action to manage your health.
