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What we learned from the Online Community in December 2021
Thank you to every member of the T1D Exchange Online Community for inspiring others who come to this community for advice and to know they’re not alone. Here is what we learned from the 3 most popular questions of December 2021!
1. In what year were you (or your loved one) diagnosed with type 1 diabetes (T1D)?
The most answered Question of the Day in December 2021 showed the tens of thousands of years of experience with T1D within this community! The distribution of responses reflects a wide range of experiences with T1D – from people who are relatively newly diagnosed with T1D to people who remember a time without any way of accurately measuring blood glucose levels.
The 1970s was the most popular decade selected, with 18% of the vote. However, the 1990s were close behind with 17% of responses, and the 1960s and 1980s each had 16%. According to these responses, more than half of our online community has lived with T1D for more than 30 years. On the other end of the spectrum, 3% of our community was diagnosed with T1D within the past two years.
Here are the most popular comments for this question:
- “Only since the last 5- or 600 years have we had records and documentation enough for people to accurately know how old they were. I do know that when my T1D was diagnosed we had abacuses and slide rules.”
- “Diagnosed T1D first week of September 1991 in such healthy condition the ER staff said my lab results said I should have been transported to the MORGUE instead of WALKING into the ER!
I walked into the ER after my Doctor from the Clinic called to tell them I was going there and instead of sitting in the ER waiting room, nurses recognized and greeted me by name and immediately had me lay on a gurney and was wheeled into the ER.”
- “After nearly a year of all the symptoms, at 33 years old with no family history, I was 115 lbs at 5’11’ (yep) and very very sick.
Many years later, while not perfect, I’m kicking T1Ds ass. I was able to get pregnant, I have a wonderful boy and a loyal husband who is able to deal with all my highs and lows and middle of the night Dexcom screaming alarms.”
2. If you use a continuous glucose monitor (CGM), do you usually hear and wake up to its alerts while you are sleeping, as opposed to sleeping through the alerts?
Our second most answered question of December 2021 sparked some interesting conversations around the importance of CGM alerts and ensuring that someone hears the alerts if the person with T1D tends to sleep through them.
The most common response to this question was “I often wake up, but not always”, with 38% of community members selecting this option. Overall, almost three-quarters of people reported that they wake up to their CGM alerts often or always, while only 2% said they never wake up to their CGM alerts.
Here is what some folks in the Online Community shared:
- “I have my alert set very loud since I am a sound sleeper. I am always awoken when it sounds. The irritating aspect is when my CGM says I’m reading 60 and I test with strips (always the gold standard) and strips read 100.”
- “I always wake up with the alarms, that is why they are there. I don’t often feel my BG level so I really like the Dexcom CGM with alarms. Yes, they are loud but they have a purpose. I’d rather be woken up in the night than not wake up at all.”
- “My pump alerts from the CGM are on vibrate. Most of the time the vibrating wakes me. If I’m very low I get the alarm which wakes me and my husband. I REALLY wish there was a “do not disturb” button for non-critical alarms. Waking at 3 am to an alarm that says “your sensor will expire soon,” (usually with at least 12-24 hours left!) or “order a new transmitter. Your transmitter will expire in 30 days” is very frustrating! Can we program it so those only come during waking hours please???”
- “The alerts are pretty annoying and I want to complain about them. Have to stop myself and realize that the CGM and pump are doing their jobs, saving my life.”
3. If you have T1D, have you been diagnosed with retinopathy?
December’s third most answered Question of the Day showed the prevalence of retinopathy in Question of the Day responders. Of the 470 people who answered this question, 33% have been diagnosed with retinopathy at some point, and 67% have not.
Here’s what some community members shared about their experiences:
- “Dr. Just diagnosed something similar to macular degeneration- can’t remember the exact name. I wrote it down but lost the piece of paper. 72 today, 60 years with T1d. Still alive and kicking up a storm! (can see well enough to read this!) Happy * Birthday to me!!!”
- “Yes in 1981 – 19 years in since being diagnosed at age 8 in 1962. It was early prolific, just beyond background stage retinopathy and because I was in a diabetes research study arm of the DCCT and wanted to get pregnant, the endocrine team overseeing my treatment recommended I have both eyes treated. Had laser treatments in both eyes over a period of a year (1981-82) and my eyes have been quiet w/o any new retinopathy developments ever since. I have also managed to keep my A1Cs in the 7.5 to 6.5 range for years.”
- “YES, diagnosed with retinopathy in 1966 and told, as at that time there wasn’t any treatment other than removal of pituitary gland that I’d be totally blind within two years. I wanted another opinion, and found Dr. Lloyd M. Aiello who confirmed the diagnosis and told me about a theory he wanted to try that MAY provide help.
I volunteered and had my first, of many, LASER treatments in 1967. The rest is history and still see well. I was blessed by being in the right place at that time.”
- “So sorry! But don’t blame yourself. Diabetes is weird that way- you can spend a lifetime working at it and then poof! Something else pops up. I say * diabetes!”
We learn something new every day from this community’s Question of the Day responses. Thank you for sharing your experiences and wisdom with us!
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