What I wish I had known
When TJ Houppert had surgery at age 19, she had elevated platelets. The doctor said it was nothing to worry about. Fast forward a few decades and her platelet count reached 1.5 million. That’s when a bone marrow biopsy confirmed she had essential thrombocythemia (ET), a classic myeloproliferative neoplasm (MPN).
“While I never imagined chronic leukemia would be a part of my life story, I have learned to embrace life with this and not let ET own it,” she recently told MPN Research Foundation (MPNRF). TJ turned her diagnosis into a mission, joining MPNRF’s Patient Impact Council as an advocate.
There’s so much she wishes she’d known. TJ was pregnant when she was first diagnosed and frustrated by her doctor’s lack of MPN understanding. It took her some time to find an MPN specialist in Upstate New York.
“I wish somebody would have told me that I’m not alone in this. It’s huge to know someone else with the same rare condition,” TJ says, “because it feels very isolating at times.”
“I wish I would have known that I could lean on organizations like MPN Research Foundation and Leukemia and Lymphoma Society to be connected with somebody else with the same disease.” Through her experiences with these organizations, she’s seen how they can help patients learn the basics about MPNs.
“I look to help drive education surrounding MPNs, so that people understand that there is hope for a strong, healthy and happy life despite the diagnosis. Then I look to inspire scientists and clinicians to drive technology forward that leads us to continued quality life.”
TJ’s experience with MPNs grew more personal when her father was diagnosed with myelofibrosis (MF) in 2022. “We’re chemo twins,” says TJ about her father. While there isn’t a known genetic connection between her ET and her dad’s MF, there are uncommon examples of familial predispositions to MPNs.
There was a downside to TJ’s MPN familiarity; she knew the struggles her father would face. “I know what it feels like to take those pills every single day.” Her emotions still run high. “It’s still difficult to think about to this day,” she explains.
Her father’s diagnosis changed the way TJ considered her own MPN. She grew concerned about disease progression but also her life’s priorities. “It really caused me to take a step back,” she says, “and think about what are those important things that I want to accomplish in my life, personally and professionally.”
“Those are the things that I really have started to key in on since his diagnosis, what’s it going to mean to live longer, to have a healthier and happier life?”
TJ’s feels dedicated to the patient community and that is why she joined MPN Research Foundation’s Patient Impact Council. “I am committed to raising awareness in the medical community about MPNs in hopes of earlier detection, and increasing peace of mind for those newly diagnosed.”
Along her ET journey, TJ found she is neither alone nor isolated. She has met a number of people living with MPNs. “Many of those I’ve connected with have stayed in touch over the years,” she says. “We’re a rare, wonderful breed.”
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.