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At What Age Were You Diagnosed With T1D? – Renal.PlatoHealth.ai

Top Questions of the Day in March

At T1D Exchange, we learn something new from our Online Community by asking a “Question of the Day,” every single day. People living with T1D can learn so much from the shared experiences of others. Consider sharing our Online Community with T1D friends, so they can be part of a community that “gets it,” too.

Last month’s Top Questions:

  1. At what age were you (or a loved one) diagnosed with T1D?
  2. How many times a year do you miss planned events because of something T1D-related?
  3. When you go away for the weekend (2 nights), how many low snacks do you bring with you?

(*Some comments are lightly edited for clarity.)

At what age were you (or a loved one) diagnosed with T1D? 

Here’s what our Online Community members had to say:

  • “Sadly, my diagnosis at age 55 was a total shock, and even my doctor was surprised. My body surely went into some shock or state of stress as months prior, I had lost quite a bit of weight and was experiencing tremendous thirst. At first, my family doctor diagnosed me with T2D, and I was prescribed 500mg of Metformin before leaving on an already scheduled cruise. I did return home with symptoms of ketoacidosis and rushed to emergency where I ultimately was diagnosed as a T1D and met my now amazing endocrinologist.”
  • “Came on just as I turned 28. I started noticing weird symptoms in mid-late October, dx’d in mid-December. Doc told my wife she probably would not be able to wake me up the next morning. This was 1983, so it was still called “juvenile type” on my record and even told me about the upcoming change of terminology to the “Type” thing because you could get autoimmune at any age. It still flips me out how many people, including medics, haven’t absorbed that point. “You’re too old, must be Type 2!”
  • “I imagine there are some of us here who already know this, but for the others who were diagnosed 50 years ago or more, did you know there’s a Facebook group for us? It’s called (not surprisingly) “Type 1 Diabetics for 50 years+.”
  • “I was 8. There’s a history of auto-immune disease on both sides of my family. My maternal grandfather had T1D, and my paternal grandfather had lupus.”
  • “I am “celebrating” the 38-year anniversary of my diagnosis today. I was 18 and came home from school to find my mother and her friends all crying while celebrating her birthday. I asked what was wrong, and she told me I had T1D. Good times.”

How many times a year do you miss planned events because of something T1D-related? 

Here’s what our Online Community members had to say:

  • “The only thing I’ve missed have been two workouts when I woke up much lower than planned and was not able to rebound in time to go do a hard work workout. But it’s not an issue.”
  • “The way my work life went, I gave up planning to do things decades ago. If I wanted to work overtime, the most reliable way to get the overtime was to plan on doing something or going somewhere on my days off. If I had nothing planned, it was almost guaranteed that I’d have the time off. But without fail, if I had made any plans, it was guaranteed that work would require me to work the entire time of whatever I had planned to attend.”
  • “If having to bail on an event early due to pump failure counts, then yeah, 1-2 a year maybe. Not often, but not never.”
  • “I almost never miss events because of urgent T1D situations (blood sugar issues, DKA, etc.) — but I frequently miss events because of diabetes complications (gastroparesis flares in particular). When COVID and flu rates are high, how many events do I just not even consider because of that risk? That feels very different than bailing on an event that I planned to attend because of a diabetes emergency, but it still has the net result of me not going to an event.”
  • “I’ve never missed anything, but I’ve been late because I won’t drive if my BG is too low.”

When you go away for the weekend (2 nights), how many low snacks do you bring with you? 

Here’s what our Online Community members had to say:

  • “I always have extra snacks (four or five snack bars) and three or four Welch’s gummy packs in the car and in my purse. A 2-night overnight stay would mean six or more to be safe.”
  • “I don’t actually count as I always carry several life savers or dextrose-type carbs (smarties, nerds etc.). I know it is always more than six servings, however.”
  • “The purpose of the trip affects the number of snacks; for a relaxed sit-around kind of activity, I don’t need many, but if the intent is hiking or other vigorous outdoor activities, I will pack more!”
  • “I carry a “stash bag” with me everywhere I go. It is filled with honey, juice, water bottles, rice cakes (several varieties), cracker jacks, popcorn, a banana, and dried fruit. I also include replacement cannulas, cartridges, alcohol swabs, IV Preps, etc. My bag is big and heavy. But I carry it literally everywhere I go.”
  • “My go-to is juice. Two days = two bottles of juice, just in case. I get the Naked juice 15.2 fl oz bottles.”

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