“How do you even spell ET?”
“People are walking through this diagnosis without knowing what it means or what to expect or where to turn,” says Ben Hohenbrink, a member of MPN Research Foundation’s (MPNRF) Patient Impact Council, not to mention how to spell their diagnoses. He is committed to helping patients, researchers, and even practitioners better inform and understand each other.
Ben was diagnosed with essential thrombocythemia (ET) at age 33. It was 2012 in rural Ohio and while MPN research was beginning to make some progress, the gap in understanding the disease and its progression was still massive. Ben’s primary care physician sent him to an oncologist at his local hospital when his platelet count hit just under one million. Later it peaked at 1.3 million. Still, nobody seemed too alarmed. His first bone marrow biopsy showed no JAK 2 mutation; CALR and other mutations were not yet known. By 2014, Ben traveled to Ohio State in Columbus to see a hematologist/oncologist, where a follow-up biopsy showed he was positive for CALR.
He remembers how he felt at the time. “I looked at risk stratification. I was not at the highest risk for disease progression, and that provided some level of reassurance.” The CALR findings provided clarity for him “where before there was just uncertainty.”
He now reflects on having the CALR mutation from a perspective not available to patients just 10 years ago. “A current clinical trial to target and manage CALR with monoclonal antibodies could open potential doors,” for a better future for him and other ET patients.
Ben’s blood counts “started going funny” and he began “crashing at 7pm every night, exhausted all the time, struggling to do normal things with family and friends.” That’s when he decided to be more proactive and went to Cleveland to see an MPN specialist, nearly three hours away. He was diagnosed with myelofibrosis at a 2.5-3 level of fibrosis and prescribed ruxolitinib, which he has taken for the past several months.
Ben’s experiences inform him of his dedication to improving patient and clinician communication around MPNs. He describes more than one disturbing conversation before he switched to his current clinician. “Some things you just have to live with,” he remembers a member of his last care team saying, still startled by this not uncommon advice. “And that was before we even spoke about possible treatments.”
Along the way, his path led him to MPN Research Foundation and a desire to participate on the Patient Impact Council.
“I want to help patients . . . factual research vs relying on Google,” he says. He hopes to help empower patients and their families to better understand their disease and feel more comfortable sharing with others how it feels and what they may struggle with day to day.
“I feel better now than I have in years,” says Ben, who describes a time when walking through the office “was like walking through a swimming pool” and climbing stairs had him breathing harder than ever. Still, he has met with a transplant specialist, so he is “ready to go if and when we decide the time is right.”
As he participates in research reviews and events such as the 2024 MPN Roundtable™, Ben is most excited to hear the conversation transitioning to disease– altering approaches.
“How can we really modify this disease? There is a lot of hope . . . to make people’s lives better, not just make them feel better for a while?”
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.
