Evan K. and Lorie K.

Evan K.

18 years old

  • Severe hemophilia A
  • College student
  • Volleyball player

Lorie K.

  • Hemophilia A caregiver
  • Evan's mother

Meet Evan K. and Lorie K.

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Evan at the beach

Evan & dad

Evan & Lorie

    Growing up

    Lorie:
    Hemophilia A runs in my family. I had two cousins who were on crutches, in wheelchairs, missing school constantly.

    I knew I was a carrier and there was a chance I could pass hemophilia on. Evan was diagnosed in utero, so we were able to prepare early on what to expect, and how this could change our lives.

    Evan:
    When I started infusing, it was a pain in the butt for everyone, I feel like. Then they decided to put a port in. I started getting self-infusion classes down, just in case we wanted the port removed, and then at age 9 I got it removed. I was still doing the classes on self-infusion just to overcome that fear and not be scared of it, because it is a pretty scary thing to do. So then one day, I was tired of my mom overseeing it, and started doing the IVs myself.

    Today

    Lorie:
    Evan's 110% boy. He's my outdoorsy, do-it-all kind of kid. He's very active. He's been active since he was little. I think something that we saw when I was growing up with my cousins, is what I feared for my son; they were kind of kept in a bubble and they weren't allowed to play sports. Evan has played several sports, including volleyball and soccer. We have always checked with his doctor before starting a sport or activity.

    Both my boys are very musical. Cory loves to sing, and plays guitar and piano, and Evan is a drummer. He was the one beating on the house everywhere he went, so for Christmas we got Cory a keyboard and Evan a drum set. He's been playing drums ever since he was little, and enjoys music.

    Evan playing the drums

    The family having fun

    Evan:
    I've been drumming since I was 9 years old, playing in the church band, playing with my brother, playing for fun.

    I'm in college now, and I've told a lot of people that I have hemophilia A, and they're like, "Wow, really?" because they have friends who have it, and they've learned about it. I feel like I can be open about it and I'm managing it pretty well.

    My schedule is pretty busy—I play volleyball on Thursdays, and I lift and run when I can—and I have school, homework, and a job. I bike, not all the time, but when I can, on the weekends with some friends, or by myself. Before starting any sport or activity I always check with my doctor.

    My treatment with KOVALTRY®

    Evan:
    I started on KOVALTRY® in March of 2016. I've been on prophylaxis with KOVALTRY for several months now. It's a good fit for my schedule, and Bayer has the tools and support that I need. This is just my experience. Every patient is different.

    Before starting KOVALTRY®, I met with my doctor to discuss if KOVALTRY® might be right for me. My doctor and I talked about the risks associated with KOVALTRY®, which include inhibitors, headache, fever, and itchy rash (see additional safety information below).

    "Evan enjoys life. I think sometimes he flies by the seat of his pants, but he has a lot of goals and aspirations."

    -Lorie K

    Climbing to the top

    Looking forward

    Lorie:
    Evan enjoys life. I think sometimes he flies by the seat of his pants, but he has a lot of goals and aspirations.

    Evan:
    I'm at Pennsylvania College of Health Sciences in Lancaster; it's a nursing school, I'm going to be there for 4 years, to get my BSN, and hopefully be a pediatric nurse. It's awesome, I love it. I mean it's tough, what nursing school isn't, but it's doable—you just have to put your mind to it.

    Growing up in the hospitals and being around the hospitals when I was younger definitely inspired me to want to give back to the kids and to people in general; to let them know that being in a hospital and getting surgery isn't as scary as it seems.

    I feel like you don't have to be tied down just because you have hemophilia A. You don't have to let hemophilia control you. You can reach for the stars, do great things, and still be who you are.

    Join the Conversation!

    Want to share your patient or caregiver story?
    Let us know if you would like to be contacted—your experiences could be featured in KOVALTRY® Conversations.

    Register to share
    your story
    Justin C
    Justin C, 39 Frequent traveler,
    prophylaxis 3x/week
    Evan K and Lorie K
    Evan K, 18, &
    Lorie K, Mother
    College student, volleyball player
    Seth P
    Seth P, 33 Avid runner, newly married
    Jason C
    Jason C, 37 Father of four,
    prophylaxis 3x/week
    Seth K
    Seth K, 25 Basketball coach,
    prophylaxis 2x/week

    INDICATIONS

    KOVALTRY® is a medicine used to replace clotting factor (Factor VIII or antihemophilic factor) that is missing in people with hemophilia A.

    KOVALTRY® is used to treat and control bleeding in adults and children with hemophilia A. KOVALTRY® can reduce the number of bleeding episodes in adults and children with hemophilia A when used regularly (prophylaxis). Your healthcare provider may give you KOVALTRY® when you have surgery.

    KOVALTRY® is not used to treat von Willebrand Disease.

    IMPORTANT SAFETY INFORMATION

    You should not use KOVALTRY® if you are allergic to rodents (like mice and hamsters) or any ingredients in KOVALTRY®.

    Tell your healthcare provider if you have heart disease or are at risk for heart disease.

    The common side effects of KOVALTRY® are headache, fever, and itchy rash.

    Allergic reactions may occur with KOVALTRY®. Call your healthcare provider right away and stop treatment if you get tightness of the chest or throat, dizziness, decrease in blood pressure, and nausea.

    Your body can also make antibodies, called "inhibitors," against KOVALTRY®, which may stop KOVALTRY® from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for the development of inhibitors to Factor VIII.

    Tell your healthcare provider about any side effect that bothers you or that does not go away.

    Call your healthcare provider right away if bleeding is not controlled after using KOVALTRY®.

    For additional important risk and use information, please see full Prescribing Information.

    You are encouraged to report negative side effects or quality complaints of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

    © 2017 Bayer. All rights reserved.
    Bayer, the Bayer Cross, and KOVALTRY are registered trademarks of Bayer. Bayer Access Solutions is a service mark of Bayer.

    Site Last Modified 06/2017