Take any unusual symptoms seriously and get checked out. Be your own advocate and do not back down...having an MPN does not have to hinder your life. Life is only as good as you make it.
*This story is a patient's first-person experience and is not an endorsement of any drug or activity by MPNRF. Please consult with your physician (preferably an MPN specialist) before making any therapy or lifestyle change.
Karolyn Reder of Bay City, Michigan reminds us that an MPN diagnosis will be met with challenges, and won’t always be smooth sailing, but her attitude teaches us that life is really only ever what you make of it. It’s about perspective. And Karolyn’s perspective is refreshing considering the storms she’s encountered.
Karolyn was diagnosed with Essential Thrombocythemia at the age of eighteen after a routine blood test, and four years later faced a major complication in her journey of living with an MPN. In 2004, at twenty-two years old, Karolyn suffered a stroke. As Karolyn sees it though she’s fortunate the stoke wasn’t worse. “The stroke only affected me physically. My cognitive skills are still intact.” She says. While the stroke meant Karolyn could no longer run, swim, or ride a bike like she once did, and required a six-month leave from work, Karolyn a naturally driven woman was eventually able to return to her work as a nurse and believes having an active lifestyle throughout her adult life is why she’s doing as well as she is today.
After taking Hydroxyurea for a decade, Karolyn’s doctor suggested a second bone marrow biopsy two years ago and her results showed a progression to stage one Myelofibrosis. Since the progression she has been treated with Interferon which she is handling well and hopes will keep her fibrosis in check.
A healthy diet is important to Karolyn as well as still making time for the things she enjoys like reading and traveling. She is, of course, thankful for her physical and occupational therapists who have helped her along this journey, as well as friends, family, and doctors at the University of Michigan. Karolyn is also hopeful for a cure someday and more effective treatments for stroke and stroke deficits. What would she tell others with an MPN? “Take any unusual symptoms seriously and get checked out. Be your own advocate and do not back down...having an MPN does not have to hinder your life. Life is only as good as you make it.” She says.
Contributed by Jennifer Acker
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 the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.