My diabetes journey

Hi, I'm Heather.
I was diagnosed with type 1 diabetes in 2004, when I was in the third grade. I went to the doctor's office the Thursday before Easter Sunday. My first concern when being told I had type 1 diabetes was whether or not I'd be allowed to eat the chocolate bunny waiting for me on Sunday morning.

I was nine when I was diagnosed, but diabetes was not something new to my family. My youngest brother, Aiden had been diagnosed just a year and a half before my 2004 diagnosis. Aiden was 14 months old when he was diagnosed.

Shortly after my diagnosis, I became involved with diabetes advocacy. My family and I have always been the first to sign up for research studies and programs that might advance diabetes research, and as such I've been very involved with advocacy work for diabetes awareness and care. I joined a "Teen Leadership Council" (TLC) at the American Diabetes Association (ADA) office in Seattle, which was the closest major city to my hometown, and built connections there that have stayed with me ever since.

The TLC did a little bit of outreach to the greater Seattle area, but it also was involved with programs like "Family Retreat" for younger and newly diagnosed families to make connections and learn to navigate diabetes care as a family. The ADA also hosted other overnight programs, and a yearly "Day at the Capitol" specifically targeting political advocacy for diabetes care. These programs had a huge impact on me as a young person finding her voice, and are a major reason I decided on Political Science as my collegiate study of choice.

When I entered high school I maintained my connection to the TLC, and applied for the ADA's "National Youth Advocacy" program (this no longer exists, sadly.) In December 2012 I was informed that I'd been picked to be the 2013 "National Youth Advocate" for the American Diabetes Association. With that title, I was able to grow my network and widen my platform for advocacy and specifically engage the youth in learning about the Safe at School program that is well-established now in public schools across the country.  This title changed my life. As the National Youth Advocate (NYA) I travelled to Chicago, to Nashville, to New York for various events to speak about my experience and share why diabetes advocacy and awareness are so important.  I visited Washington D.C and spoke with elected officials, sharing why legislation and funding should take into account the real-life challenges people with diabetes face, and the sheer number of diagnoses that happen every year in the United States.  I found my voice and, more importantly, I was able to use it as NYA.

Once I entered college my advocacy and leadership in the diabetes community tapered off. I focused on my academics and on making sure that my personal diabetes journey went smoothly through college (it didn't go perfectly smoothly, as it hardly does, but I did my best.)  I went with my brother to as many advocacy events as my school schedule would allow, and my sophomore year I was able to visit Washington D.C again with the advocacy group to re-iterate the importance of diabetes awareness at the Capitol. The events became fewer and further between, however, as my college career progressed.

I've struggled with my diabetes care as I gained independence, but I've also made leaps and bounds of progress in understanding my body and the way that I treat myself, as both a person and as a person with diabetes. I've learned the importance of distinguishing between those two personas- "person" and "T1D"- and taking self-care into account for both parts of my identity.

My sophomore year of college I transitioned from my youth endocrinologist, who was an absolute godsend and became a good friend, to an adult endocrinologist near my university.  The summer after my junior year I did a few studies with a local research program on diabetes care and management, and finally my senior year of college I began using the Dexcom Continuous Glucose Monitoring system- and my A1C dropped almost immediately.

I graduated college with a Bachelor's degree in Political Science and am now navigating the real world, working part time in campaign management as I prepare myself for four years of law school.

My plan is to earn a law degree and work in advocacy, for diabetes and for any other cause that needs loud voices.

Throughout my diabetes journey- something I talk about at length when I discuss how diabetes affects my life with friends- I maintain a normal life. I was a cheerleader throughout high school and the majority of my college career. I was involved with student government and was Student President of my university my senior year.  I stayed up until 3am, I bonded with my roommates over normal things like boys and crappy professors.  I even attended the occasional college party and had the occasional margarita after I turned 21.

Diabetes is, and always will be, a huge part of my daily life. But I refuse to let diabetes dictate my life's progress, or deter me from any life decisions.

But I've still got a lot to learn, so stay tuned.