From camper to advocate
Meet Eric Burgeson, Sanofi CoRe Manager
Eric Burgeson, Community Relations and Education (CoRe) Manager: Published September 2023
When I was 8 years old, I attended a bleeding disorders camp for the first time. For this out-of-shape kid who wanted to be more active, it was a life changing event. And not just because I had to leave behind my video games!
Camp is where I was first able to safely physically push myself outside of my normal boundaries, under the supervision of an experienced care team who understood my condition. I was able to try new things I had never done before and feel comfortable with failing. Also, I was able to connect with kids I could relate to. As I became older, I felt that parents of the campers turned to me for first hand perspective on what it’s like to live and age with the disorder.
My experiences at a camp for kids with bleeding disorders and other serious illnesses were essential in defining my path in life.
The experience I had at camp put me on a path to having a better understanding and management of my disorder, connecting with the hemophilia community, and hopefully becoming a role model for kids with bleeding disorders. It also led me to ultimately embark on a career where I educate and advocate for people experiencing this all encompassing disorder.
Taking on self-infusion
Camp was also where I learned to self infuse at age 12, but at that time, I was too scared to do it regularly. When my mediport broke when I was 16, the hard learning of self-infusion began.
It sounds like a simple thing–take a needle and stick it in your arm. But it’s definitely a skill you have to learn. There were a lot of misses as I was trying to understand my body. Then came the many little breakthroughs, such as figuring out the best spot for the tourniquet, which angle to put the needle in, techniques to minimize blood leaking from the injection site, the importance of staying hydrated, and making sure I’m warm so that my veins are dilated. When I’m done and applying pressure to the injection site, you might find me walking around, texting with the one hand that’s free up in the air.
Self-infusion is a craft you can learn by paying attention to your body and listening to tips from people who know what you’re up against.
Camp helped me a lot with learning to self-infuse. My parents gave me support when I needed it, and distance when I needed that too.
Pursuing the life you want
My life is extremely active. I enjoy weightlifting and drumming, and recently completed my masters degree in public health in addition to working full time. I push myself to live as close to a “normal” life as possible. But even though it’s natural to want to focus on the positive, I don’t want to downplay how tough things can be. Growing up with a bleeding disorder is hard. The pain, scars, and fear are real.
The key is having respect for the condition for what it is, a chronic, rare, genetic disorder. It’s such a fine line separating a person with hemophilia from complete disability, so I can’t say this enough: Speak with your doctor and stick to the treatment schedule you’ve agreed upon. We are so fortunate to live in a time where treatments are available. Without them, I’d be staying home.
Infusions are disruptive to life, and it takes time and effort to fit them into your schedule. Plus, the pain of infusions is something no one looks forward to. The commotion of everyday life might get in the way (like when my cat comes over and touches my sterile supplies). But it’s so important to keep up with treatment.
I use a tracking app to help me remember when to infuse and to keep track of bleeds. Just recently, after looking back through my app, I was surprised to see that I actually had more bleeds than I remembered. Having that info helped me evaluate where I am and have a productive conversation with my doctor.
I credit my health today to the commitment my family and I have made over the years to stick to my prophy (prophylactic) schedule and take charge of my health. Life is good!
Connecting to the community
Everyone needs love, support, and connection. When you have a rare and serious disease like hemophilia, it’s even more important to get connected to people who can relate to your experiences and share their knowledge.
My first big step into the greater hemophilia community was through camp–first as a camper, then as a leader in training, counselor, and volunteer. I looked forward to it every year and as a young adult would have loved to stay at camp forever. I channeled that energy into helping educate members of the hemophilia community, which I get to do everyday as a Sanofi CoRe Manager.
Your path is what you choose it to be. But never forget there’s a supportive hand always ready to catch you in the form of the community.
There are so many opportunities to educate yourself and connect with the hemophilia community. Consider attending patient events. You may learn something and meet others going through a similar experience.
Ask your CoRe Manager for information and resources to help you and your child decide if they are ready for camp.
