Patient Script

ELOCTATE® [An hemophilic Factor (Recombinant), Fc Fusion Protein] Peer Story – Chayse P. I have a confession to make – I’m a music junkie…hopelessly addicted to the art, especially rock. When I was younger and my hair was down to here, people would even ask me if I was some kind of headbangin’ rock star. Funny thing is, I am a headbanger – always have been. Currently, I compose, record, and perform music, and I teach kids guitar, drums, piano, and vocals at a music school. On a more literal level, back when I was a young child, I used to run through the house, banging my head on everything in my path as I belted out songs from Guns & Roses. My mom was usually hot on my trail, yelling at me to slow down. The problem was Mom wasn’t just annoyed by my rambunc ousness; she was fran cally insistent that, despite the fact I was wearing a helmet indoors, I was at risk of ge ng seriously injured. You see, for a kid with severe hemophilia A, being a headbanger wasn’t cool at all. In fact, it was quite possibly life threatening. While I’m being compensated by Sano Genzyme to speak today, I’m excited to tell you how I became empowered to literally and gura vely take o that helmet and face the challenges of life with hemophilia and to share my experience with ELOCTATE. I was born to young but very focused and driven parents. My dad was about 20, and Mom was just 18 and s ll in high school, but they were happy and excited to start a family. A er undergoing rou ne newborn procedures in the hospital, I bled profusely, but with no history of bleeding disorders in my family, I was not tested to see what the cause might be. They just patched me up, kept an eye on me for a few days in the hospital, and then sent me home. When my mom graduated from high school and started work shortly a er that, she’d pick me up from the babysi er at the end of the day, and I would be covered with bruises. Every day, I’d have new bruises. Again, I was not tested for any abnormali es but, instead, perpetually kept safe within a barricade of pillows.

One day, when I was about six months old and beginning to move around more, I was put in a walker.

A er li ing me out of it a short me later, my parents were shocked to see a deep bruise around my mid-sec on exactly the shape of the walker. This me, they took me to the doctor, and a er a full ba ery of tests, I was diagnosed with severe hemophilia A. It was determined that my mother was a spontaneous carrier. No one else in my family has it – including my younger brother who was born one year, one month, and one day a er I was. So, it was just the two of us – one robust and healthy and the other as fragile as glass. Following my diagnosis, the decision was made to put a port in my chest and start me on a prophylac c regimen of daily factor infusions.

Despite the stress I’m sure my condi on added to the inherent strains on a young couple, my parents stayed together for a few more years before they split up. The next several years a er the divorce couldn’t have been even slightly easy on my mom. She took several jobs at once while she was single, raising two li le boys. She’s the strongest woman I’ve ever known, and honestly, that’s really helped me in my ba le with hemophilia. I’ve wri en many songs about her incredible resilience. On top of the physical and nancial demands, there were emo onal pressures too. Believe it or not, people who had seen the extensive bruises on my body reported my mom to the Division of Family and Children Services.

I can’t imagine how hard that must have been for her – and for many other parents of children with bleeding disorders who are eyed suspiciously or falsely accused – but it is a painful reality.

When I was about ve or six years old, my dad married my stepmom – another fantas c female role model in my life. She gave me two more li le brothers and – nally! – a li le sister. I was a kid with hemophilia who had been wrestling brothers all the me un l she came along. She’s probably my favorite sibling because she’s the sweetest…and de nitely the least dangerous. My mom remarried a few years a er dad, and my stepdad also became a very in uen al presence in my life. Thinking back about the struggles I’ve been through – whether with hemophilia or life in general – I realize it’s all about how you recover…how you bounce back. I’ve always tried to be posi ve and have a good outlook. I have nothing but love for everyone in my family, and I have no regrets about any of the challenges I’ve faced, including hemophilia. It’s who I am.

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ELOCTATE® [An hemophilic Factor (Recombinant), Fc Fusion Protein] Peer Story – Chayse P.

At seven years old, I went to a ve-day camp for children with hemophilia where I learned to self-infuse.

It was a fantas c, magical paradise where nurses came every single day to check on us and make sure we were doing well. One of them came to help me with my factor, making sure to explain every step and demonstrate how it was done. She was very detailed, happy, and high energy. Then she said, “Why don’t you try?” I was hesitant, so she just walked me through it slowly un l I was comfortable and able to do it myself. Prior to this me, it had always been my mom, my grandmother, or my aunt Beth, who is a nurse, who gave me my factor. Once I knew I could infuse on my own, I felt accomplished, independent, and in control. To this day, I go back to that camp as a volunteer, and not too long ago, I experienced the joy of helping another child successfully self-infuse for the rst me. I work with kids every single day when I’m teaching music, but helping another kid face the same problems and fears I did at that age resonates with me in a way that’s hard to explain.

A er I got the port and learned to do my own infusions, life eased into a predictable rhythm. Things seemed more normal, although I s ll had bleeds and had to limit certain ac vi es. My father had been a star athlete at the same high school I went to, and everyone thought I’d play sports like he did. Aside from the fact that contact sports and hemophilia are not very harmonious, I don’t think I was made for sports. Music, on the other hand, was a di erent tune. I rst got interested in music because my mom was an amazing singer and piano player. She taught me to play a few chords on the piano when I was nine, and we eventually started to perform at church. I learned to play guitar at about the same me.

One day, my mom said, “You know, I used to play drums at church too.” What? At that age, I thought, “A girl can’t play drums.” Then I saw my mom play drums. So, she taught me percussion, as well as how to sing and harmonize – I loved it all! The ming was great, too, because by age 10 or 11, it had become clear that skateboarding, jumping on the trampoline, and playing football with my friends were way too risky. Even though I took precau ons, I’d frequently come back with scrapes, bruises, and bleeds. On one hand, I would miss those ac vi es with the neighborhood kids, but I didn’t skip a beat diving head- rst into the music world.

Music was a soulful, safe place where I could express myself freely and crea vely. I became completely obsessed with singing and playing guitar and wri ng my own songs. Then, during my sophomore year of high school, my mom told me about an opportunity to sing, act, and play piano in a community teen theatre produc on. I went for the audi on on a whim and ended up being cast in a lead role opposite this cute theatre gal named Ka e, with whom I shared my rst stage kiss. Li le did I know, six years later, on my 21st birthday and a er many years of friendship, I would ask Ka e for a second kiss. Two years a er that, I would ask her to marry me, and we ed the knot on November 25, 2018.

During college, I had put on weight, so at 6’2’’ and upwards of 230 pounds, there was a lot of pressure on my ankles. I had had so many bleeds in my right ankle that bone spurs were growing inside – causing extreme pain. They scheduled me for a synovectomy to remove in amed joint ssue, and I was hospitalized for a week. It took a year to heal properly.

It was also in college that I had an appointment with my hematologist, where she told me about a treatment for hemophilia A called ELOCTATE. I had been on my previous treatment so long I wondered why she would bring it up. What made it di erent? She said it was the rst Factor VIII with an extended half-life, so I wouldn’t have to infuse as o en. We also talked about how ELOCTATE was approved to reduce bleeds, including joint bleeds. Finally, we discussed the risk of developing inhibitors that could prevent ELOCTATE from working e ec vely, as well as the side e ects of ELOCTATE, such as muscle pain and general discomfort. In my mind, something that could o er joint bleed protec on and be taken less o en was worth a try, so I started on ELOCTATE in 2016.

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ELOCTATE® [An hemophilic Factor (Recombinant), Fc Fusion Protein] Peer Story – Chayse P. For quite some me a er going on ELOCTATE, we did a blood test once a month to make sure my treatment was working well for me. My labs were in my target range, and I have not had a major bleed. I have experienced minor bleeds, including in my ankle which has been a target joint for me, and I have been able to treat these bleeds with ELOCTATE. I am very happy about my results with ELOCTATE and feel con dent that I am doing what’s best for me to protect against bleeds. It’s important to remember though that everyone is di erent. Be sure to talk to your doctor about a treatment plan that could work for you.

I am so thankful for the life I’ve been given. I love spending me with my family, working out at the gym, and playing A LOT of music with other folks. I joke that playing in bands is my real cardio! Would I choose to have hemophilia if I had the op on not to have it? Of course not. But I o en think about this: would I be the musician I am today – and I’m pre y darn good at this point – if I had not poured all my me, talent, and treasure into it because of this disorder? I had to nd something else to capture my a en on, and it had to be something that would give me the freedom to take o the helmet…to explore, create, and express myself without the fear of ge ng hurt or of what anyone else would think of me. In the process, I’ve discovered that being unique is powerful. I’ve never kept my hemophilia secret or been afraid to tell people about it, but by embracing it and nding a way to ourish within it, the things we can accomplish are extraordinary.

I’d like to end by telling you about a guy I know named Chip who has really helped me keep things in perspec ve. Chip was severely disabled by hemophilia during the ‘70s and ‘80s. Despite what he’s been through, he has chosen to be the bright, colorful person he is today. He inspires a new genera on of hemophiliacs by reminding us, with absolutely no resentment, how blessed we are to live with this disorder in a day where there are more treatments and resources available to us. I think people like Chip are the backbone of our community – those who have had to bear the worst in life so we could be strengthened by their stories.

I want to encourage everyone here with hemophilia or caring for a child with hemophilia: if you are living under a helmet of fear, take it o . We can live con dent, produc ve, and purposeful lives. As my buddy Chip would say, “Today is great, so there’s always hope for tomorrow.”

I’m happy to now answer ques ons you might have about my experiences. Be sure to follow up with your healthcare team about any medical ques ons.

Thank you.

MAT-US-2016573 08/2020

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