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    • 2 hours, 30 minutes ago
      Ahh Life likes your comment at
      If compensation were offered for research participation, what format would you prefer?
      Unmarked non-sequential bills under the table is preferred. Cash plus free insulin or CGMs would be fine too. Eversense is really missing out on an opportunity by not partnering with trials to offer a free E365 and insertion to get people to try their device.
    • 1 day, 13 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Every 9 days I have to have to change an infusion set after one day use to switch the sensor to the other side - come on deccom you can do better
    • 1 day, 13 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 13 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change infusion sites every other day rather than every 4th day. I’ve been doing this for years after I started to see my insulin requirements increase dramatically on the 3rd day. It’s not really “earlier than recommended” since my endo agrees with this schedule and writes my prescriptions to accommodate it.
    • 1 day, 14 hours ago
      Ahh Life likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I usually extend them rather than cut their longevity short. I am insulin resistant and if I don't refill pump at day 2 I can't get to day 3-4. So, I usually use it a day longer than instructed due to the refill. And before moving to G7 I would restart my CGM and get an average of 14 days with some rare, 21 day uses in the mix. Sadly, Dexcom has figured out how to make more money off us by forcing a restart every 10 days with a transmitter built in.
    • 1 day, 16 hours ago
      Molly Jones likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 19 hours ago
      Lawrence S. likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 20 hours ago
      Daniel Bestvater likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 21 hours ago
      dholl62@gmail.com likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 21 hours ago
      TEH likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Sites on my legs seem to get irritated with resultant higher glucoses by day 2, so I often change out these sites every 2 rather than 3 days.
    • 1 day, 22 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 1 day, 22 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 1 day, 22 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 1 day, 22 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 1 day, 22 hours ago
      atr likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 22 hours ago
      Chrisanda likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 2 days, 14 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 14 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 2 days, 16 hours ago
      Mary Thomson likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 16 hours ago
      TEH likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 18 hours ago
      Kristi Warmecke likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 20 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      I don't have problems reading published results. I'm more concerned with information that doesn't get published or is just left out.
    • 2 days, 20 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      Why would you want to restrict plain language disclosure to participants? How about plain language for everybody?
    • 2 days, 21 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 2 days, 21 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
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    If you (or your loved one) were diagnosed with T1D as a child, at what age were you diagnosed?

    Home > LC Polls > If you (or your loved one) were diagnosed with T1D as a child, at what age were you diagnosed?
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    Do you currently use any of the following CGM systems?

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    If you use a CGM, do you ever experience “compression lows”? These are inaccurate CGM readings that occur when there is pressure placed on the CGM transmitter and sensor. They typically look like a sudden and drastic drop on a CGM graph, and often occur when a person is lying on their sensor.

    Sarah Howard

    Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.

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    29 Comments

    1. Ahh Life

      I have always believed in getting a head start on everything. I went to the starting blocks in 1951 at age 4 and have been racing ever since. Uhh . . . when do I get a break in this race?

      8
      4 years ago Log in to Reply
      1. Amanda Barras

        Same, I had just barely turned 4. It’s easier now, but no break in sight. 😢

        2
        4 years ago Log in to Reply
    2. Mary Dexter

      https://diabetesjournals.org/care/article/44/11/2449/138477/Adult-Onset-Type-1-Diabetes-Current-Understanding

      1
      4 years ago Log in to Reply
      1. Wanacure

        Wow. Thank you, Mary! This is really an interesting article. As it points out there is insufficient research on South American and African inhabitants. And there are so many different indigenous and ethnic groups and clans on those two continents! I suspect there are as many types and causes of diabetes mellitus as there are types and causes of cancer, another autoimmune disease. In both diseases there are some behaviors that can increase risks and behaviors that may decrease risks. And sometimes behavior makes no difference, because of environmental exposures and/or genetics. Should people reading this have picked different great great grandparents? Or just different grandparents? Could our mothers have picked different zip codes to give birth to us to avoid certain detrimental environmental effects?

        4 years ago Log in to Reply
      2. Mary Dexter

        I was 48, initially misdiagnosed as T2. For those unwilling to read the article, it says that after nations around the world crunched their data, they discovered that the majority (over 60%) of people newly diagnosed with autoimmune diabetes (T1 and LADA) were adults, not children and that 40% had been initially misdiagnosed.
        10 years ago when I wrote The Sweet Lowdown for Diabetes Hands, the research I was reading said nearly 50% and 20%, respectively. As those misdiagnosed are correctly diagnosed, the percentages have shifted.
        The other thing I learned from producing Sweet Lowdown, is how vehemently people will fight against any disturbance in their misperceptions. One lady said after a performance, “I learned a lot of things I didn’t want to know. ” Segments of the show are on YouTube under my name.

        4 years ago Log in to Reply
    3. Amanda Barras

      I had just barely turned 4.

      4 years ago Log in to Reply
    4. Kathy Morison

      Age wise I was 20 years old but it was considered a juvenile onset diagnosis.

      4 years ago Log in to Reply
    5. Louise Robinson

      I was in my late 20’s when diagnosed. In 2 weeks time, I went from weighing 120 lbs to 107 lbs and had the excessive thirst and frequent urination symptoms during that time. Because my Dad had been diagnosed in the early 1950’s, I grew up watching him try to manage his diabetes, test his urine and give himself insulin (the only medication available for diabetes back then was insulin-U40 Protomine Zinc/Beef-Pork derivative- and no differentiation was made between different “Types”.) Because Dad had always had literature about the warning signs of diabetes, when I discovered I had those symptoms and sought medical help, I wasn’t surprised by my diagnosis. I began using insulin in 1976 shortly after a GTT confirmed the diagnosis. Watching my Dad deal with his diabetes made it easier for me to accept my diagnosis. I am grateful I did not have to cope with my diabetes as a child. I am also thankful for the strides in technology and improved tools and knowledge we have to better manage our condition.

      1
      4 years ago Log in to Reply
    6. Joan Benedetto

      My son was diagnosed at 18mos of age.

      4 years ago Log in to Reply
    7. Lawrence S.

      Age 23

      4 years ago Log in to Reply
    8. mbulzomi@optonline.net

      I made it to my 23rd Birthday, two years out of the USN, that’s when the T1D Adventure began.

      4 years ago Log in to Reply
    9. CandyM

      I was diagnosed in 1970 at 23 months old. I have lived with T1D for 52 years. The change in what is available to help manage this disease over those years is amazing!

      5
      4 years ago Log in to Reply
    10. Mark Schweim

      Diagnosed September 1991 at 24 years young but based on how much time I was sick and weak that year I’m guessing I probably actually got it at least 6 months to a year before it was properly diagnosed.

      4 years ago Log in to Reply
    11. Kristine Warmecke

      I was 11 on Jan. 5, 1982 when my Mom finally took me to our GP, who confirmed I was T1D, we had known all of Christmas/New Year trip.
      My brother was diagnosed at 7 months old 1972.

      4 years ago Log in to Reply
    12. Lynn Smith

      In May of 1965, I had a severe case of the mumps. I was 10 years old at the time. That was when my body attacked my islet cells. It wasn’t until October of 1967, a week after I turned 12, that my T1D was finally diagnosed. Between the mumps and my diagnosis I just kept getting thinner and thinner, with more and more bouts of vomiting. So…I probably should have been diagnosed when I was in my eleventh year, but I had just turned 12 when I was hospitalized.

      4 years ago Log in to Reply
    13. Sue Martin

      But I would like to say I was diagnosed at 18, so I guess technically an adult. My doctor put me on oral meds but thought it odd since I was so young, not to be on insulin. I needed to take insulin about 9 months later.

      4 years ago Log in to Reply
    14. Sue Martin

      When I was 19 (diagnosed at 18) I was in Europe. There were some terrorist bombings in the city I was in. My dad told me if I was ever taken to tell them I had an incurable disease and maybe they would let me go or at least not mess with me too much.
      It seems there may be a cure in sight now.

      4 years ago Log in to Reply
    15. Douglas Holt

      I got type 1 diabetes for my tenth birthday!
      Diagnosis when I was 9 in the hospital that afternoon. Woke up in the hospital with a cup of beef broth and some adhesive tape with Happy Birthday scribbled on it in red ink.. My two year old sister was diagnosed a month later..

      4 years ago Log in to Reply
    16. Bob Durstenfeld

      My dad was Dx”ed at 18 months of age, I was Dx’ed at 18 months of age, my eldest of three sons was Dx’ed at 8 months of age and his eldest of two daughters was dx’ed at 18 months of age. Welcome to monogenic diabetes.

      1
      4 years ago Log in to Reply
    17. Nicholas Argento

      1968 was a bad year for the US and me but 54 years later I am thriving…

      4 years ago Log in to Reply
    18. Sasha Wooldridge

      2007, about a month before I turned 21. Then was mismanaged by my primary care doctor because they assumed I had T2 because I wasn’t a child. Finally got to see an endocrinologist after over a year on the waitlist and they straightened things out so I didn’t wish I was dead all the time. The constant swings in BG until then were horrible and a simple trip to the store would wear me out to the point I’d basically pass out when I got home. Shocking that even medical professionals don’t understand diabetes enough to know the difference between T1 and T2.

      4 years ago Log in to Reply
    19. Wanacure

      My elder cousin was diagnosed as T1D and I know it was before she was 17, and I think it was after she was 12. After measles, mumps and chickenpox I developed T1D at age 15. Three years later my younger brother was diagnosed at same age. He had measles, mumps and chicken pox at same times I did. We were both under emotional stress before developing TID. My younger cousin has never developed diabetes. The age difference between her and her T1D sister was at least 6 years. It might be interesting to compare our 4 DNA samples.

      4 years ago Log in to Reply
    20. Rose Lentzke

      Still living the life after 66 years withT1 as my best friend;)

      2
      4 years ago Log in to Reply
      1. Anna Kiff

        Lol on .. best friend. Never looked at it that way .. but sometimes my friendship with them .. can drive me bonky wonky. I’ve always wondered what not having T1D would be like. Do you ever wonder that too? Especially if diagnosed as in childhood like you and I obviously were. I help adults that get diagnosed and feel for them since it’s like their freedom has been snatched away ..and I totally get that (I also dabble in mental health which goes along side of any long term health condition).

        4 years ago Log in to Reply
    21. M C

      Diagnosed at 16 years, 5 months, back in mid-1970’s…. Would have probably been diagnosed sooner, but despite ‘knowing’ something was seriously ‘not right’, I didn’t dare share this with my parents, as I was signed up for a school trip over the March school break, and knew, if something was wrong they wouldn’t let me go….. The weird thinking of a teenager!!! When we got back from overseas, I was told that the level my BG had reached often causes people to go into a coma! Luckily, it didn’t, and I was home safe and sound – A day and a half after landing back home, I found myself in the hospital! First family member, for both parents’ sides of large families, to ever be diagnosed with Diabetes. And, save for my Dad, who at 81 developed T1D (never had been a T2D) after cancer treatments and the shock of losing my Mom, we’re the only two.

      1
      4 years ago Log in to Reply
    22. Michael Andrews

      I was 38, it was during the first few months of my first daughter’s life, and I had no idea what was going on with me until I realized I’d lost 35 lbs in 3 months. Went to the Dr.; my sugar was 300+, and I was on the verge of hospitalization (thankfully, it didn’t go that far). Six years and 2 sets of twins later (5 girls under 7), all is well, and life is good; it super stressful, but it’s still good!

      1
      4 years ago Log in to Reply
    23. C T

      1996. I had just turned 2 in December and was diagnosed in February. My grandparents spent the better part of a year bringing me to the pediatrician because I was repeatedly soaking my diaper and had gotten very thin and sickly. Was told over and over that it was “just a virus”. Was eventually rushed to Boston Children’s with a BG of over 900. I was there for a very long time.

      1
      4 years ago Log in to Reply
    24. PamK

      I was 2 1/2 years old.

      4 years ago Log in to Reply
    25. Cheryl Seibert

      I was diagnosed at age 6, about 18 months after I had German measles (the 14-day ones). I also had double-sided mumps just before the measles. My paternal grandmother had Type 2 and was on injections.

      4 years ago Log in to Reply

    If you (or your loved one) were diagnosed with T1D as a child, at what age were you diagnosed? Cancel reply

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