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Every day, we ask our Online Community to answer our Question of the Day. These questions are geared towards people affected by T1D, including those diagnosed with it, caregivers, health care professionals, and researchers. Don’t forget to check in daily to answer our Question of the Day.
Here’s a look at our most popular Questions of the Day in July.
(*Comments have been edited slightly for clarity as needed.)
In the past 5 years, have you participated in a T1D research study that tested a potential new device, drug, process, or other intervention?
These days, we’re seeing new technology, products, and medication options for diabetes every year. But every new technology and medication requires research and testing! Every new product depends on patient voices and feedback. We can’t hope for new things if we don’t get involved in the process. When was the last time you participated in diabetes research?
Here are a few insightful comments from community members:
- “I answered no as I have not been in an in-person study but do many studies online asking questions about potential new T1D products, designs, etc.”
- “Yes, as recently as this month. The latest of many diabetes intervention studies in which I’ve been involved since my first intervention for which I volunteered in 1966 – to test LASER Photocoagulation to contain retinopathy.”
- “Yes, but just online market research. I got paid, though!”
- “I participated in Tandem’s Control-IQ trials and Dexcom’s adhesive trials for the G7 sensor.”
- “I have not participated in a study yet, but I do keep in contact with my physician’s assistant who specializes in diabetes as she sometimes knows of studies that may be coming out that I may be interested in.”
If you use a CGM and share your real-time glucose levels with other people using an app (e.g., Dexcom Share, Carelink Connect, Night Scout, etc.), with whom have you shared your live CGM data? Select all that apply!
T1D is a 24-hour disease! Sometimes people find it helpful to share their CGM data with their personal networks to help with someone of the daily management that comes with T1D. Of course, that can be a big decision — you might not always want someone else in your personal diabetes data. Blood sugar levels can feel like a personal diary entry, a source of frustration or guilt, or just a constant report card. Parents of children with T1D obviously depend on that sharing technology to help little T1D warriors stay safe throughout the day — and while sleeping! Who do you trust with your data? When is it helpful to share?
Here are a few insightful comments from community members:
- “Our daughter’s data is shared real-time with our school nurse, and with other family members (grandparents, aunts) who provide care for her.”
- “No one seems to want that much data. They want my A1c, at most.”
- “Shared my Dexcom data with my wife for about 48 hours once. The BG swings and alarms scared the pants off of her! So, I do not share real time data any longer. Unless the individual has T1D, they really don’t understand the BG roller coaster we live on!”
- “Doc who looks at it every three to four months. I do not share with anyone who gets alarms when I am going high or low. Yikes, couldn’t imagine doing that to someone.”
For how many years have you been going to the healthcare practice where you currently receive your T1D care?
Since there aren’t that many endocrinologists or doctors that specialize in T1D-related care, when a patient with T1D finds a good match, they tend to stay with that provider. Our community shared with us that some of us have been seeing the same T1D care provider for over 30 years! We are always grateful for those that give us great care and support when it comes to managing T1D. We all deserve a healthcare team we trust, feel comfortable talking to, and feel supported by through the daily work of living with T1D.
Here are a few insightful comments from community members:
- “I have been with the same provider for 20 to 25 years; however, my provider has changed practices, and I have followed.”
- “I’ve been going to my health care practice for diabetes issues for 27 years! They treat me well, and as an individual person, and I truly appreciate their help.”
- “I always say it took me six years to train my endo. He listens to my opinions, and we discuss treatment options. I try to keep up with the latest diabetes news.”
- “I was forced by insurance to switch in 2021. The hospital where my previous team was gone out of network. In 2022, they went back to the network, but my old endo retired. I didn’t feel like switching back because it would be a new doctor all over.”
- “I’ve been using the same hospital, which is local to myself, for the past 43 years, ever since I was diagnosed. I will add, however, that it’s not the same endocrinologist/diabetes consultant/diabetes specialist nurse(s)/dietitians, etc. as many have changed over the years.”
Thank you to every member of the T1D Exchange Online Community for sharing your experiences. Your words inspire others who come to this community looking for advice and the reminder that they’re not alone.
If you are not already a member of the T1D Exchange Online Community, join today!