I've never known a life without Type 1 diabetes. Diagnosed as a 1-year-old, I have strived for a cure for T1D for as long as I can remember. Today, more than 1.25 million young people in the U.S. alone are afflicted with this chronic, 24/7 autoimmune disease, with the Juvenile Diabetes Research Foundation estimating that another 40,000 receive this diagnosis each year. The exact cause of T1D is not known.
Throughout these past 14 years, I have experienced many advances in technology, switching from 12-plus daily finger sticks and shots to insulin pumps and continuous glucose monitors to closed-loop systems. I have had the benefit of resources to manage my blood sugar levels which has allowed me to have a normal teenage life. I have also been lucky to live in the Bay Area with access to world-class technology, hospitals and support systems.
This was never more evident to me when I recently had an accidental insulin overdose. Thanks to the quick response and expert training of Marin County firefighters, I did not die that night. Had I looked at my insulin pump only 10 minutes later, I would not be here today.
Not everyone with T1D is so fortunate.
There is no cure for T1D, something I have been on a mission to change. Through the generosity of our community, my family and I created the Royal Ball, a family friendly gala that raised more than $1 million for T1D research over its six years. My JDRF One Walk teams have raised over $65,000 in the last decade. And, I was honored to be the Fund-A-Cure speaker at the JDRF Hope Gala in San Francisco in 2018 that raised more than $2.8 million.
In addition to raising dollars, I have been working to help raise awareness for legislation on Capitol Hill. Today, the cost of managing T1D is estimated at $14 billion per year with the cost of medication continuing to skyrocket. When I enter the workforce and become too old for my parent's health insurance, the costs to manage my disease will clearly outpace my earning potential. This is a paradigm that must shift for everyone with T1D – and it can happen with effective lobbying and changes in our legislation.
This year, I was honored to attend JDRF's Children's Congress in Washington, D.C., where I advocated to renew the Special Diabetes Program and lower the cost of insulin. The SDP provides $150 million annually to T1D research and is essential to fund clinical trials and to support cure research. Currently, our U.S. Congress is considering this renewal with a Dec. 20 deadline. With a minute of your time and a simple click, you can take action and help millions of people with T1D.
I've been able to live a normal teenage life thanks to the support of so many people. Yet, living with diabetes can still be hard and scary at times. Through writing, I've found comfort and only recently discovered that I'd written more than 100 poems from kindergarten through high school.
In an effort to help other people with this disease, I put together Onederland: My Childhood with Type 1 Diabetes, a collection of poems on a variety of topics from T1D to sunsets to worn-out shoes. All proceeds from the $12.95 book will be donated to T1D nonprofits including JDRF, Beyond Type 1, and diaTribe. By purchasing a copy and looking at the world through my eyes, you will support T1D non-profits and their groundbreaking work toward finding a cure and improving the lives of millions of people, like me, who live with T1D.
Onederland will be featured at a Book Passage family-friendly event on Sunday, December 15 from 4-6 pm.
Jamie Kurtzig is a sophomore at Marin Academy and lives in San Anselmo.
