What happens when you don’t fit the “typical” patient profile? For Dana Turner, being a young, high-functioning adult with an MPN meant her symptoms were often dismissed. Now, she’s helping push research and recognition forward—ensuring younger patients are seen, heard, and supported.
By the time Dana Turner was officially diagnosed with polycythemia vera (PV) in her early 30s, she had already spent more than two decades trying to make sense of symptoms no one else seemed to take seriously.
As early as kindergarten, her pediatrician ran annual CBC tests that showed elevated platelet counts. “They were consistently in the 400s and 500s,” Dana recalls. “No one said anything about it, had any questions, or thoughts about what the possible cause was.” In elementary school, she began experiencing migraines with aura and was soon diagnosed with Raynaud’s disease — a condition that causes her fingers and toes to lose circulation and turn white in cold temperatures.
For more than a decade, her symptoms persisted unnoticed — until a routine checkup in 2019 finally reopened the conversation. Dana’s primary care physician decided to order a CBC test. “We haven’t done one of these in a long time,” she recalls her saying. “Let’s see where you’re at, since you’re so healthy and young.” The results showed her platelet count had climbed into the 900s, prompting a referral to a hematologist. She was then diagnosed with essential thrombocythemia (ET), which was later updated to polycythemia vera (PV) after additional testing.
For much of her life, Dana internalized the idea that she was the “healthy one.” Her older sister has a neuromuscular disability, and growing up, Dana was seen as the sibling without medical needs. “Even when I had migraines, Raynaud’s, and lower energy, I just assumed [my symptoms] were because I was smaller, more petite, and less strong as the other kids.” That mindset followed her into adulthood, making it harder to recognize her symptoms as signs of something serious but it has also helped her in not defining herself by her condition.
Although the diagnosis offered clarity, the prescribed treatment brought new complications. Dana began a “watch and wait” regimen of therapeutic phlebotomies and daily aspirin — typical protocol for younger patients with no history of blood clotting before the age of 60. Despite hematocrit and hemoglobin counts stabilizing, Dana faced another unexpected challenge: her platelets began rising to over a million, as the phlebotomy treatments ‘tricked’ her body into thinking it was experiencing rapid blood loss —prompting the production of even more platelets. “I never actually felt sick or off with PV until I started phlebotomies…which left me iron-deficient and actually feeling sick and fatigued,” she says. “I couldn’t climb a flight of stairs without losing my breath.” Her energy vanished, her complexion paled, and her hair began to thin. That’s when she started advocating for a new treatment. Besremi.
After her diagnosis, Dana began seeking a sense of connection — looking for others who shared the unique experience of being diagnosed with an MPN at a younger age. But most of the resources she found were geared toward older adults. “When we look at paperwork, documentation, or pamphlets and websites, we see a lot of older faces as the voice of MPN,” she explains. “[When seeing an older patient in the media], we feel that this is serious, and we need to do something about it. With a younger patient, oftentimes there is a bit of disregard because you’re functional — you go to school, you work, you have a family.”
That realization motivated Dana to take action. She connected with peer support groups and joined MPN Research Foundation’s Patient Impact Council. “I try to advocate for the best treatment for all people and to make sure we all have access to the same resources,” she says. “We don’t have to be sick and in bed, unable to function or have meaningful relationships —quite the opposite is true. I want others to know that we want to live long, healthy lives.”
Through her work with the Council, Dana brings that message directly to the research community. By sharing her story and perspective as a young patient, she helps humanize the disease and reminds scientists that their work is changing lives. In addition, she urges researchers and clinicians to look beyond the typical symptom profiles, noting that many younger patients often present differently than those diagnosed later in life. In fact, some symptoms they experience are not even recognized as a symptom of MPNs at all. “Often times when I connect with younger patients, like those under 40, most people tell me they also have migraines with aura and Rayaud’s, and they don’t really have the bone pain or enlarged spleen necessarily.”
Dana’s journey is a reminder that health isn’t always visible — and that patients, especially younger ones, deserve to be heard long before the lab results confirm their reality. Her experience challenges current assumptions about who MPNs affect and how they present. Through her advocacy, Dana is not only changing the conversation around symptom recognition and treatment — she’s helping reshape what it means to live with an MPN: not defined by numbers, but by the ability to thrive, connect, and lead with purpose.
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.
