Dear Reader,
My name is Coco and I am 17 years old and a Breakthrough T1D Youth Ambassador. At eleven years old, I was diagnosed with type 1 diabetes (T1D) which came as a complete shock to me. I had heard of T1D before, but I had no real understanding of what it meant or how drastically it would change my life.
For a long time, I felt like my diagnosis had taken something away from me. I worried there would always be things I couldn’t do anymore, and that T1D would define my future. I felt powerless, like there was nothing I could do to make a difference.
At one of my first endocrinology appointments, my doctor told me about T1D research studies I could be eligible for. At first, I wasn’t sure I wanted to do it. I was scared it would just mean more needles, extra appointments, and a bigger reminder that I had T1D. But as the doctor explained the goal of the studies and answered my questions, I began to see things differently. The idea that participating could help researchers learn more about T1D and improve treatments for people diagnosed in the future gave me hope. It was the first time something positive had come from a diagnosis that once felt so unfair.
Starting my first clinical trial felt scary, but the research team quickly put me at ease. That trial tested a new medication to prolong the honeymoon period, which meant regular visits to the research hospital and weekly shots of the trial medication. It seemed like a lot at first, but it easily became part of my routine, and it was empowering to know I was actively contributing to the progress of T1D management. When the year-long study ended, I was surprised to feel sad rather than relieved. I had built real connections with my trial healthcare team, and it was special to work with people who cared so much about diabetes.
After that, I signed up for pretty much every study I was eligible for, from online surveys to trials with frequent all-day visits. One online study looked at how social media use affects T1D management in teens; all I had to do was send a weekly screenshot of my screen time and time in range, plus fill out a short survey. It was simple, but I knew I was still making an impact. Other studies were more hands-on, with in-person visits and tests throughout the day.
Of course, there will always be hard parts – fasting, new medications, IVs – but for me it has always been worth it. Every study is different, and you can really choose one that fits your comfort level and schedule. Breakthrough T1D has partnered with Antidote to make it really easy to find a trial that’s fitting for you by using the Clinical Trial Match Tool. BT1D also has local Clinical Trial Education Volunteers you can learn from and ask questions regarding trials that are now enrolling near you.
Looking back, clinical trials have changed the way I see my T1D. I used to think of it as something that would only hold me back, and now, I see it as an opportunity to contribute to something that impacts not just me, but millions of people like me.
By participating in a trial, you might not see a difference right away, but your contribution could change the future for individuals living with T1D.
Sincerely,
Coco, 17 year-old T1D Warrior and Breakthrough T1D Youth Ambassador
Contact your local CTEV (Clinical Trial Education Volunteer)!
Our CTEV’s can help answer any questions you may have regarding research or clinical trials, get you in touch with local clinics and share more about trials that are currently enrolling!
Alaska
Jude Restis, [email protected]
Laura Tremblay, [email protected]
Oregon
Jude Restis, [email protected]
Laura Tremblay, [email protected]
Idaho
Mark Smith, [email protected]
Montana
Julie Geddes, [email protected]
Washington
Jude Restis, [email protected]
Laura Tremblay, [email protected]