Ivan was diagnosed with severe hemophilia A at two days old, when doctors noticed that his feet were bruised and bleeding. At the time, his parents were not aware of any family history of bleeding disorders. But he did have an uncle who had died at age seven. Looking back, it seems to fit that he died from a bleed associated with a serious injury. Since Ivan's birth, two cousins have also been diagnosed with severe hemophilia. But hemophilia is not the only thing that runs in his family. “Baseball is in my blood. I come from a long line of baseball players – father, grandfather, uncle, brother. So I always played – there was really never any question about it.” Despite his diagnosis, Ivan played baseball throughout his childhood and teen years, even playing semi–pro for two years. Today, in addition to his job as a general contractor, work as an Octapharma Patient Educator, and activities as a busy parent, he coaches teams and runs baseball clinics for youths with bleeding disorders. “I can't get enough.”
Ivan attributes much of his can–do attitude to what he learned from his parents. “I came up in a time when involvement in sports was just not part of the program for kids with hemophilia.” But his parents were different, always encouraging him to play and to pursue what he loved. “Sure, my mom watched games with her eyes closed. And we spent many hours in the ER after sports–related injuries. But nothing could keep me off the field.” Similarly, in his social life, Ivan always felt like just one of the guys. He was very open about his hemophilia, infused in front of his friends, and maintained a large social network and support system. “Some kids, especially teenagers, worry about being different – being made fun of or being bullied. But not me. Yes, I walk with a limp because of damage to my ankle from hemophilia. I always say, ‘That's just how I walk.’” Ivan has carried this positive attitude into adulthood. “Today I tell parents who worry about the safety of their children that ‘kids will be kids’. When they fall, they'll get up. They're going to get cuts and bruises. But they'll also learn how to take care of themselves. They'll become independent. And they'll have fun.”
Like many people with bleeding disorders treated from an early age, Ivan received on–demand infusions at a Hemophilia Treatment Center. “I have had the same nurse my whole life, up until she recently retired. She was a great resource for me and taught me how to self–infuse.” At age 12 he began prophylactic treatment, supplementing with on–demand infusion as needed. And he began treatment at home with self–infusion, with his mom playing shortstop. “My mom ordered all my meds, kept track of my schedule for infusions and appointments, and basically handled everything for me.” When Ivan entered high school, he received a scholarship that took him far from home. Now he had to assume responsibility for managing his treatment. “You can't just run home. I learned to keep track of my factor and my infusion schedule for myself. I always had my contacts at the ready in case I needed help. I was very motivated not to miss a treatment because I always wanted to be back on the baseball diamond.”
Ivan has been on two different factor therapies; on NUWIQ® for the last four years. “On my previous product, I was on an ‘every other day’ regimen. After switching to NUWIQ, I was able to reduce my dosing frequency significantly. So NUWIQ has been perfect for me.” Ivan also did his efficacy research. “If you have hemophilia, you're going to get bleeds. You want the drug that will get you back on your feet fastest. Through my research, I learned that even one on–demand infusion of NUWIQ after an injury could be very effective at resolving a bleed.” His treatment regimen with NUWIQ has been extremely successful. “I don't want to jinx it, but I can't even remember the last time I had a bleed, it's been so long.”
“I have met great people all over the country as a Patient Educator for Octapharma. But I especially love reaching out to the Hispanic community.” Ivan believes that there is a need to get beyond a language barrier, and that resources and support available in Spanish are much appreciated. “That's why I do presentations in Spanish. I want everyone to get the information they need. And to feel connected.”
This material represents individual patient and/or caregiver experience living with a bleeding disorder.
This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Please consult with your local Hemophilia Treatment Center physician or other health care provider if you have any questions related to management of bleeding disorders.