What was life like growing up with hemophilia?

My family did not have a history of hemophilia, so my diagnosis was a complete surprise. My mom noticed that I was getting a lot of bruises as a baby, including on my arms and legs when I started crawling, and eventually I had joint bleeds in both of my knees.

She took me to the doctor, where she wasn’t met with many answers, so she spent the following week researching bleeding disorders on her own. She thought that I most likely had hemophilia based on my symptoms. Not too long after, I was officially diagnosed with severe hemophilia A. Without my mom’s persistence, we may not have become aware of my disorder until much later, and my treatment might have been delayed.

As a kid, my mom enrolled me in the Midwest Hemophilia Association’s Camp Wilderness, where I was able to meet others who had hemophilia. It was such a relief to know that other people had this condition—up until that point, I felt like I was the only one who did. This experience was so important to me that I eventually became a camp counselor, so that I could provide this type of support for the next generation.

Have things changed for the hemophilia community since you were first diagnosed?

I still volunteer at camp and participate in educational seminars for the community, and we talk about bleeding, how to recognize it and the complications associated with it. Some of these kids don't even know what it’s like to have a bleed because treatment standards have improved so much, which is amazing to me.

How did your interest in the medical sciences develop and how have you continued to pursue this?

When I was young, I really looked up to my hematologist because of the impact they had on my life. As I got older and learned more about the ins and outs of the healthcare industry, I decided I wanted to be a pharmacist so I could help make a difference in the world, too. I am thankful now that I have my Doctor of Pharmacy (PharmD) degree, I am able to maintain peer-to-peer relationships with hematologists and other healthcare providers who treat people with hemophilia. I help encourage scientific exchange by sharing new data and studies to better understand the condition and how it is treated.

Working in this space makes me feel at home, because it’s something I can speak about confidently and passionately, from a place of professional education and personal experience. When I have a conversation with a healthcare professional, advocacy organization or patient, I can say that I truly understand the issues they are facing. Being able to share in that understanding is incredibly important to me.

How do you see research and data making an impact for the hemophilia community in the near future?

The research and education that is taking place now is planting seeds that will grow and hopefully support the community as it works toward its goal of having zero bleeds. At the end of the day, any advancement that helps a patient worry less about their condition is a step forward, because no one should have to feel like their life is controlled by hemophilia.

What advice do you have for the younger generation of the hemophilia community?

I encourage younger members of the community to get involved in any way that works for them. Just talking to someone who has experienced the same struggles or achieved a shared goal can make all of the difference. I serve on the board of the Midwest Hemophilia Association, and I’m also committed to helping others through peer-to-peer mentoring. If I'm not able to help someone myself, I point them toward others who can, including community organizations and leaders.

My life revolves around hemophilia in the best possible way. Hemophilia showed me a community that was so supportive, so well-educated and so willing to accept people. Being born with hemophilia and being able to manage the disease through treatment and community has given me something to speak passionately about, both from a scientific and personal perspective, and for that, I’m extremely grateful.