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    • 3 hours, 22 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, 14 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, 14 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, 14 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, 17 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, 20 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, 21 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, 22 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, 22 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, 23 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, 23 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, 23 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, 23 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, 23 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, 23 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, 15 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, 15 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, 17 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, 17 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, 19 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, 21 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, 21 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, 22 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, 22 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 were diagnosed with diabetes as a child or teen, when did you transfer your care to an adult diabetes provider (e.g., adult endocrinologist, adult diabetes specialist, adult primary care provider for your T1D)?

    Home > LC Polls > If you were diagnosed with diabetes as a child or teen, when did you transfer your care to an adult diabetes provider (e.g., adult endocrinologist, adult diabetes specialist, adult primary care provider for your T1D)?
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    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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    36 Comments

    1. Bob Durstenfeld

      I transfered providers when I left for college.

      4 years ago Log in to Reply
    2. Abigail Elias

      My pediatrician—not a specialist—took care of me for about 9 months, then I left for college at age 17 and saw an “adult” endocrinologist. I didn’t shop around and have no idea if pediatric endocrinologists existed. As a college student I considered myself to be an adult.

      1
      4 years ago Log in to Reply
    3. Ahh Life

      The correct answer for me is non-numeric. Had a pediatrician until age 14. Then had no medical care / visits for probably 10-15 years. If you’re not sick, who needs a doc, right? ͡⚈ ︵ ͡⚈

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

      I was an adult a 23 when I became a diabetic. But, did not see an Endocrinologist until 1998. Let’s see, I would have been 45 years old before I saw my first Endocrinologist. (I had to do the math twice, and shake my head). Oh, If I had only known to see an Endocrinologist sooner, how much better could my life had been.

      2
      4 years ago Log in to Reply
      1. Lawrence S.

        And, how much better my family’s life could have been.

        1
        4 years ago Log in to Reply
      2. LizB

        Other than one appointment right after my diagnosis at 19, I didn’t see an endocrinologist until 18 years later. I wish I had done it sooner instead of just seeing a PCP.

        4 years ago Log in to Reply
      3. KarenM6

        I know what you mean, Lawrence S!
        I had been diabetic for 25 years before I found out there was such a thing as endocrinology!

        4 years ago Log in to Reply
    5. Melinda Lipe

      Diagnosed at age 9 in 1966. My general pediatrician (who later specialized in pediatric gastroenterology) offered to take care of my diabetes because his office was closer and more convenient. At about 15, I started seeing an adult general practitioner and didn’t see an endo until age 29, other than being closely followed by my OB during 2 pregnancies in the ‘80s when fingersticks became available.
      Since 1989, I’ve seen my endos regularly.

      4 years ago Log in to Reply
    6. Mary Dexter

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

      The experiences of those diagnosed as adults differ from those diagnosed as children: Having to repeatedly prove that one isn’t T2 and does indeed require insulin. Being expected to suck it up, figure it out on our own, manage perfectly and in a way that doesn’t impinge on anyone else. Weight gain viewed as a character flaw, rather than a symptom of our body betraying us once again.

      2
      4 years ago Log in to Reply
      1. KarenM6

        Hi Mary!
        I hear ya! I have experienced all of those same things (except having to prove I wasn’t type 2) as a child, so I actually get it.
        Now that I’m older, I find myself having to add the “proving one isn’t type 2” every so often.
        I wish I could fix it for you!!! :/

        4 years ago Log in to Reply
    7. Joan Fray

      My dad had T1d so when I got it (age 12) I just went to him. Until I switched to Kaiser, age 23.

      4 years ago Log in to Reply
      1. Joan Fray

        I meant I went to his endocrinologist. Although my Dad was a pediatrician, so mostly didn’t have to go to ‘the doctor’.

        1
        4 years ago Log in to Reply
    8. Pam Taylor

      I was diagnosed at 16, 5 months before I turned 17. Our family doctor (after my second stay in the hospital some 4-5 months later) sent me to an Internist who specialized in diabetes.

      4 years ago Log in to Reply
    9. Jeff Balbirnie

      My primary died two weeks after I graduated high school. Had zero need or ever seen one before then…. My primary offered excellent care

      4 years ago Log in to Reply
    10. Don P

      those names mentioned above were NOT heard of when I was diagnosed …tooooo many years ago !!!

      1
      4 years ago Log in to Reply
    11. BOB FISK

      This happened back in 1966, when I was 17. I had been diabetic for 3 years. I had always had trouble with hypoglycemia in the late afternoon almost every day (I used a single injection of Reg and NPH) so my mom looked to find a solution. I had been in the care of a Pediatrician, and my mom found a diabetes specialist in the same city. I also think she was looking for a miracle cure, or at least the latest therapy. The endocrinologist put me on 3 injections a day, which immediately alleviated the hypoglycemia issue. Unfortunately, disposable syringes were not yet available, so I had to boil a glass syringe before each injection, which was a bit inconvenient.

      4 years ago Log in to Reply
    12. Jneticdiabetic

      I was diagnosed at 18 y/o and seen by an adult endocrinologist from the start.

      4 years ago Log in to Reply
    13. LizB

      I was diagnosed at 19, but treated in the pediatric/adolescent ward in the hospital. The endo who treated me during the week I was hospitalized told me to make an appointment with her for 1 weeks after I was released. Her other patients were all younger teens and I felt a little out of place. I had no insurance (the hospital got me temporary Medicaid for 3 months and the state refused to extend it after that) so I only had that one appointment.

      4 years ago Log in to Reply
    14. Missy Kirchem

      I was diagnosed in 1964 and there wasn’t a pediatric diabetes specialist where we lived

      1
      4 years ago Log in to Reply
    15. Janis Senungetuk

      I was dx at the age of 8 in 1955. My pediatrician continued to be my primary healthcare provider until at 14 I started seeing an Internist who had previously been involved in the development of type 2 oral medication for adults. in addition, during those first years, I had an appointment with a diabetes specialist at a university research center. I don’t think he specifically treated children. Over my past 67 years living with T1 D, the option of receiving care from an endocrinologist has been very limited.

      1
      4 years ago Log in to Reply
    16. rick phillips

      There was no such thing as a pediatric endocrinologist in Indiana in 1974.

      1
      4 years ago Log in to Reply
      1. Kristine Warmecke

        Wow! My brother was diagnosed in 1972 by a pediatric endocrinologist in St. Louis, MO. I find it hard to believe there wasn’t ONE in the whole state of Indiana, in 1974.

        4 years ago Log in to Reply
    17. Cheryl Seibert

      Diagnosed at age 6 back in the mid-60’s. I only saw a general pediatrician once a year for a fasting blood sugar. My initial dose of insulin never changed from age 6 to age 13 when I went into ketoacidosis. We knew no one in the area that had expertise in diabetes in our city. At age 20, I married and moved to another city where one the best endocrinologists in the area had just started practice. His speciality is Type 1 diabetes. He has kept me complication-free for many decades.

      4 years ago Log in to Reply
    18. Sue Martin

      I was diagnosed at 18. I saw my first Endo at 19. When I came back to the States and got a full-time job I consistently saw an Endo from aga 22-23.

      4 years ago Log in to Reply
    19. Don (Lucky) Copps

      my care as a child was with internal medicine son providers. They both specialized in diabetes. In my mid 20s I went to a number of different Endocrinologist. still with them.

      4 years ago Log in to Reply
    20. Kristine Warmecke

      After my first year of college I was told I would be doing my “Diabetic Registry stay” at the adult registry clinic. Thus began my transfer from pediatric to adult endocrinologist , at age 19,

      4 years ago Log in to Reply
    21. Amanda Barras

      Saw a pediatrician till 18, regular doc till 22, then finally got to see my very first Endo at 23. Living 2 hours from a big city that had an Endo, that was never an option for me.

      4 years ago Log in to Reply
    22. KarenM6

      Diagnosed at 5 and I was never under the care of a pediatric endocrinologist. And, the doctors I did have were incredibly callous.
      But, I have great care now which I am very grateful for!!!

      4 years ago Log in to Reply
      1. KarenM6

        I would like to clarify that I was always under the care of an adult care doctor. The only time I went to a pediatrician was for vaccinations.

        4 years ago Log in to Reply
    23. Anthony Harder

      My first endocrinologist was very skilled. Pediatric endo was his specialty. He would refer female patients to adult endo doctors but kept me as a patient until he retired.

      4 years ago Log in to Reply
    24. cynthia jaworski

      Back in 1963, an endocrinologist was an endocrinologist. Period. There were no sub-classifications of diabetic patients, so I went to the same endo from the age of 10 until that wonderful doctor retired.

      4 years ago Log in to Reply
    25. PamK

      I could have stayed with my “child endocrine,” but chose to switch because I didn’t agree with his treatment plan. Turned out, I was right!

      4 years ago Log in to Reply
    26. AnitaS

      I had a regular primary care doctor doctor taking care of my diabetes from age 9 to 55. (1973 when diagnosed). I went to an endo one time in my 20’s but was told that since I was doing well I didn’t need to see her again and that my primary care doctor could take care of me as always. In 2019 when I was 55, my insurance changed and I was sent to an endocrinologist to manage my diabetes.

      4 years ago Log in to Reply
    27. Tim Kirchgessner

      I was diagnosed @ 34

      4 years ago Log in to Reply
    28. Cheryl Weaver

      I didn’t see a endocrinologist until I was in my late 30’s or early 40’s.

      4 years ago Log in to Reply
    29. Patricia H

      I was diagnosed in my 7th month of pregnancy at age 27.

      4 years ago Log in to Reply

    If you were diagnosed with diabetes as a child or teen, when did you transfer your care to an adult diabetes provider (e.g., adult endocrinologist, adult diabetes specialist, adult primary care provider for your T1D)? Cancel reply

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