Essential Thrombocythemia (ET)


    Meet Leah Kuhn of Waxhaw, NC a former elementary teacher and ET patient
    *This story is a patient’s first-person experience and is not an endorsement of any drug or activity by MPNRF. Please consult your physician (preferably an MPN specialist) before making any therapy or lifestyle changes.

    “I went through stages: disbelief, anger, sadness, resentment and fear, until I arrived where I am now and that is a place of acceptance, appreciation and happiness more than I’ve ever known.”

    Although Leah was just recently diagnosed with ET in 2017, she has a strong suspicion her MPN goes back some twenty years. Complicated pregnancies, relentless headaches, unexplained exhaustion, burning ears, leg pain, and a fluttering heart were just some of the symptoms Leah was living with on a daily basis.  Leah was told by medical professionals she was probably suffering from chronic depression, but her gut told her otherwise.  As a full- time teacher and mother of two, Leah didn’t have a chance to slow down or reflect on these symptoms.  It wasn’t until several years later during a routine appointment with her gynecologist that revealed something amiss in her bloodwork.  Shortly after came a diagnosis that would explain everything, and forever change her world. In 2017 a bone marrow biopsy revealed a JAK2 mutation, and confirmed a diagnosis of Essential Thrombocythemia. An ultrasound further showed an enlarged spleen. Leah was forty-nine. In that initial appointment she recalls the oncologist telling her she had seventeen to twenty-five years to live. “I went through stages: disbelief, anger, sadness, resentment and fear, until I arrived where I am now and that is a place of acceptance, appreciation and happiness more than I’ve ever known.”  To get to where she is now though meant making some difficult decisions.

    A teacher of twelve years, Leah found herself with more time to devote to her profession as her children grew and eventually went off to college.  And her love of teaching was evident to others as she was the recipient of the Kensington Elementary Teacher of the Year award in 2016 where she taught fourth and fifth grade.  So it was not an easy decision for Leah to leave a profession she loved, but she knew she needed to make drastic changes to get better.

    Before Leah was officially diagnosed with ET she was also suffering from debilitating back pain that made carrying out her teaching duties nearly impossible. She recalls a November day in 2016 when the back pain and exhaustion were so bad that she couldn’t get up from a cafeteria table to take her children to recess. It was shortly thereafter she put in her resignation for what she thought was severe back pain, not realizing at the time she was also suffering from ET. “My back doctors expressed skepticism about the extent of my concerns and were dismissive regarding the high blood pressure, dizziness, ear ringing, and fatigue.”  However, making the decision to put aside her career was easier with the support of her husband David of twenty-four years by her side.  She also draws inspiration from her children Adam and Sarah who she notes,“Inspire me with their energy, exploration, knowledge, and empathy for others.”

    Slowing down proved beneficial to Leah’s overall health.  More time at home has given her the opportunity to rethink her diet, cook more nutritious meals, garden, devote more time to writing, traveling, resting when needed, and most importantly spending quality time with family.  And it’s not surprising Leah has seen an uptick in her energy and overall outlook since deciding to stay at home. Her current treatment consists of two aspirin a day, blood pressure medication and twice yearly appointments with her hematologist. Aware that she will at some point soon need spinal surgery, Leah plans to consult with an MPN specialist in the near future.

    Leah also came to realize something else; she had to forgive others for not understanding her condition. She heard all too often, You don’t look like anything is wrong with you. You must be depressed.”

    Leah admits this isn’t the jackpot she was hoping for, but a year was long enough for her to change her perspective. “I find that I really did win big because having ET improved my perspective on life and living. I am able to sift and sort what’s important, and have learned not to sweat the small stuff.  Structure your mindset to find the good, express love, kindness and appreciation often. It does wonder for you and all around you.”

    With dreams of traveling to the Mediterranean, and becoming more active in food allergy and rare disease advocacy groups, Leah has chosen to not let ET define her.  And despite not being in the classroom, Leah has found another way to stay connected to children and channel her passion of writing; she hopes to one day publish a children’s book.

    Fittingly, one of Leah’s favorite poems,The Road Not Taken, by Robert Frost has even more meaning to her now after being diagnosed with ET, and perhaps is of significance to others as well journeying down the untrodden road of rare diseases.

    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.

    Meet ANDY
    Meet JUILE
    SEE ALL Essential Thrombocythemia (ET)