Even though our yearlong #ALLin journey has ended, we continue to seek insights from people most affected by chronic conditions. One way we do this is by inviting patients and caregivers to visit our offices and speak about their health-related experiences and challenges. These visits help us connect the dots between the work we do every day and the people affected by that work. Recently, a development coordinator from the Juvenile Diabetes Research Foundation, along with young mom Brandee Faille, stopped into the KC office to talk about what it’s like to live with type 1 diabetes.
About 29 million people in the United States have diabetes. That’s just two million more than the entire population of Texas. Put another way, if there are eleven people in a room, one of them has diabetes.
Most people (about 95%) who have diabetes have type 2 — the type that can be prevented or delayed through healthy lifestyle choices. The other 5% — the folks who have type 1 — can only hope to manage their disease.
Type 1 is an autoimmune disease that destroys the cells that release insulin — the chemical needed to process the sugar we take in. Symptoms of type 1 diabetes typically appear in childhood, but not always.
“More and more people are getting diagnosed with type 1, and they don’t necessarily know how to handle it.” – Brandee Faille
Brandee, was in her 30s when she was diagnosed with diabetes three years ago. She was pregnant at the time, and her doctor assumed it was gestational diabetes, which is completely reversible. It turned out to be type 1, and Brandee said that new diagnosis meant her life was forever changed.
Many of us lucky enough not to have diabetes probably think, “Oh, just control your sugar intake, do some exercise, take your medicine, and get on with your day.” Turns out it’s not that simple.
According to Brandee, having type 1 diabetes is a full-time job. She checks her blood glucose level five or six times a day, and she always has a snack on hand in case she needs a boost. She also has to change her insulin pump every three days and her glucose monitor every seven days. Since she travels internationally for work, she has to keep backups of everything, just in case something malfunctions.
“I’m never going to wake up and just live a day without worrying about my blood sugar and insulin again.” – Brandee
Having a strong support system has been key for Brandee. “You have to have help with this,” she says, “because it’s so complex, and you can’t manage it on your own.” In addition to relying on her family for emotional support, Brandee also uses one of the dozens of apps now available to help people with diabetes stay healthy. “The fact that I can look at my watch and make sure everything is in range,” she says, “without having to check my blood all the time, is great.” In fact, Brandee’s tech sends her reminders and also shares data with her parents, her sister and her husband. If, for some reason, she’s getting off track, they can touch base and help Brandee take steps to course correct.
A California-based diabetes research institute hopes to cure type 1 diabetes within the next six years, and hopefully they’ll do it. Until then, say Brandee and Meredith, what’s needed is awareness and self-advocacy.
To learn more about type 1 diabetes, visit the Juvenile Diabetes Research Fund. To read more stories about real patients and caregivers, check out our other posts documenting our #ALLin experiences.