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    • 16 hours, 3 minutes ago
      Anita Stokar likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Hard to truly say without details. I said likely not, but really this is such an open ended question that has too many possibilities to answer.
    • 16 hours, 9 minutes ago
      Anita Stokar likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I use omnipod and dexcom G7. At 70 years old, I am fortunate to get the full 80 hours with each Omnipod which translates into three pump changes every 10 days. This works very well with the 10 day G7. I am also able to build up extra pods. I also use an open source AID algorithm so do not have to worry about having both CGM and pump on the same side of the body.
    • 16 hours, 15 minutes ago
      Anita Stokar likes your comment at
      If compensation were offered for research participation, what format would you prefer?
      It depends on the travel distance. The longer the distance the more important the reimbursement it is the total deal. If it's across the street keep the money. If it's across the country we need to talk.
    • 2 days, 10 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
    • 2 days, 10 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🧸
    • 2 days, 10 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.
    • 2 days, 11 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.
    • 2 days, 13 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.
    • 2 days, 16 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🧸
    • 2 days, 17 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🧸
    • 2 days, 18 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.
    • 2 days, 18 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.
    • 2 days, 19 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.
    • 2 days, 19 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.
    • 2 days, 19 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
    • 2 days, 19 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. 🍄🦋
    • 2 days, 19 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🧸
    • 2 days, 19 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🧸
    • 3 days, 11 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.
    • 3 days, 11 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.
    • 3 days, 13 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.
    • 3 days, 13 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
    • 3 days, 15 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
    • 3 days, 17 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.
    • 3 days, 17 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?
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    If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?

    Home > LC Polls > If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?
    Previous

    In the past 24 hours, how many times has your blood glucose gone below 70 mg/dL (3.9 mmol/L)? For this question, we are looking at separate periods of hypoglycemia, rather than consecutive glucose readings below 70 mg/dL.)

    Next

    How do you manage your stress levels? Select all that apply, and share what works for you in the comments!

    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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    39 Comments

    1. Kathy Hanavan

      My kids are adopted and my siblings are too old for the screening.

      3 years ago Log in to Reply
    2. Gary Taylor

      I needed the choice of “No, but we’ve never really talked about it.”

      2
      3 years ago Log in to Reply
      1. Kristen Clifford

        I’m pretty sure I responded the same way the last time they asked this question!

        3 years ago Log in to Reply
    3. eherban1

      I am the one and only in my family (on both sides and in both directions- ancestor/progeny) and it’s been 43 years already. My children are adults and are not likely to develop it at this point. If and when my children have their children, I think it might be prudent for them to be tested but other than that, I don’t see any benefit to anyone.

      2
      3 years ago Log in to Reply
    4. Robin Melen

      My T1D was brought on by immunotherapy, so not genetic. No need for screening.

      3 years ago Log in to Reply
    5. Nichole Pleisch

      I was diagnosed in my 30’s and both of my children have had antibody tested once. It was suggested to test again in 3 years

      3 years ago Log in to Reply
    6. Kristen Clifford

      Quit asking about autoantibodies! This question has been asked at least once, possibly twice, before. Seriously, there are other questions you can ask about T1D. Think of something new!

      1
      3 years ago Log in to Reply
      1. Mary Dexter

        I wish, instead of worrying about testing family members who have yet to develop diabetes, that doctors were more likely to test for autoimmune antibodies in the adults they assume must be T2. 40 percent misdiagnosed is unacceptable.

        7
        3 years ago Log in to Reply
    7. Mary Dexter

      Partly due to diabetes stigma, I am estranged from my siblings and child. They don’t like knowing that my diabetes and scoliosis exist, and so, to them, I don’t exist.

      3 years ago Log in to Reply
    8. Ahh Life

      I am pretty close to the bottom of my cognitive abilities . . .

      Dementia, that contemptible worm infecting so many of my kith & kin, raises it’s ugly head as a top notch manure spreader, especially with an obscene T1D-to-dementia correlation. But . . .

      I retain my sword tilting at as many windmills as is possible. My kith & kin refer to me as, “Oh yeah, that guy in the family who got the bad type of diabetes.”

      Consequently, few, if any, of them have the least bit of interest in testing themselves for anything diabetic related. C’est la vie.

      2
      3 years ago Log in to Reply
      1. MT

        👆this. Exactly.

        3 years ago Log in to Reply
      2. pru barry

        Ahh Life! Please don’t ever stop adding your pithy responses to the T1D “unload!” You always remind me that these 70 years aren’t all about micromanaging everything I dream of doing. The landscape can be as grand, as it can be frightfully annoying.
        Wishing all of us a healthy dose of verticality!

        2
        3 years ago Log in to Reply
    9. Ginger Vieira

      YES! My twin brother was screened after my diagnosis in 1999 — contributing to TrialNet’s research. My two children have each been screened by TrialNet and T1Detect. Everyone tested negative — thankfully.

      3 years ago Log in to Reply
    10. Mary Ann Sayers

      THEY are not interested in being tested, but I, being a T1D, would like them to be tested.

      2
      3 years ago Log in to Reply
    11. Barbara Bubar

      My daughter was screen when she was probably 10 or so and now, nearly 40 years later she said she really wouldn’t want to have to worry about it so “no” to being screened.

      3 years ago Log in to Reply
    12. Donna Condi

      My family has not been screened and they don’t know that they can be screened.

      3 years ago Log in to Reply
    13. Karen Newe

      All of my family exceed the age limit. I got this at 51. My first agree relatives are all older than me. I do not have children. My second degree relatives are also too old.

      3 years ago Log in to Reply
    14. Lawrence S.

      My immediate family members are all adults, living far away and have their own lives. I have not had this discussion with any of them, and seriously doubt that any of them would go through the expense of having this screening.

      3 years ago Log in to Reply
    15. Anthony Puleo

      This question should be reworded to be more quantifiable and defined. My definition of family may be different than someone else. Same for terms like some, most, etc.

      1
      3 years ago Log in to Reply
    16. Mark Schweim

      I don’t live with most of my family members so I have no clue whether any of them have ever been screened or would have any interest in getting screened.

      3 years ago Log in to Reply
    17. Jneticdiabetic

      5 years after my diagnosis, I started working at a diabetes research program that was a TrialNet screening site. My younger sister (then in her early 20s) was screened and negative.
      My parents were above the upper age limit to participate, but my mother developed T1D ~7 yrs later (at age 57). Like many have described here, she was originally misdiagnosed as T2D due to her age. Oral meds didn’t touch her blood sugars. A few months in, we were able to convince her primary doctor to test for autoantibodies and c-peptide (a measure in insulin production) and confirmed T1D. She was not in DKA, but did have fasting sugars in the mid 300s for ~3-4 mo. Always wondered if we would have detected the antibodies early if she had screened with my sister.
      I’ve also had both my sons screened when they were little (during annual JDRF diabetes walks) and they were negative.
      Since both my mom and I were diagnosed on the later side (18 & 57), I wonder about the timing of autoantibody presentation and these screenings to effectively catch the disease before it starts.
      I also worry a little about someone testing positive for 1 antibody and then stressing unnecessarily about a diagnosis that may never come.

      3 years ago Log in to Reply
    18. Олег Савицький

      No, in the 1960s -1980s such tests were not offered in the USSR. Our father got T1D in 1964. Two of his children (I too) got T1D in 1983 and 1989. God bless you all.

      3 years ago Log in to Reply
    19. Lauren Carey

      I chose other because I am the only member of my immediate and somewhat distant family with T1D, not sure that testing would show anything. I would be willing to be tested to see if I now carry the antibodies (mostly out of curiosity of how living with T1D for 37 years has affected me).

      3 years ago Log in to Reply
    20. Kristine Warmecke

      In 1972 when my younger brother was diagnosed, there wasn’t screening for T1D autoantibodies. I was watched closely and if I became sick with something associated with T1D they would do a blood sugar test at the doctor office or hospital.

      3 years ago Log in to Reply
    21. rick phillips

      I have tried and tried to get them to screen the grandchildren and they just will not do it. I believe in pre screening but well I am not the parent.

      3 years ago Log in to Reply
    22. Janis Senungetuk

      Diabetes on both sides of my family, including my maternal grandfather, yet I couldn’t convince my daughter to test or get her three kids to be tested “because there’s nothing to be done to prevent it”. Several years later she was dx. with lupus, also autoimmune and the disease that resulted in the early death of my paternal grandfather and two of his children.

      3 years ago Log in to Reply
    23. mojoseje

      3 out of four of us have diabetes and the fourth does not want to be tested.

      3 years ago Log in to Reply
    24. Natalie Daley

      Three family members who have (had) T1D got it in their late 20s or 40s. More immediate issues are their concern.

      3 years ago Log in to Reply
    25. cynthia jaworski

      No antibody screening, but we all are aware of the symptoms of t1d. My son eventually would allow me to do a finger prick glucose test on the occasions when I had been concerned about him .
      A negative antibody test does not necessarily mean that antibodies won’t develop, so the test amounts to little more than “watchful waiting,” whatever the outcome, in my opinion.

      3 years ago Log in to Reply
    26. Joan Benedetto

      Our son’s “half brother” was screened via TrialNet.

      3 years ago Log in to Reply
    27. Pauline M Reynolds

      The subject never came up. They were too busy getting diagnosed as Type 2. My husband, and 4 out of 5 children.

      3 years ago Log in to Reply
    28. Becky Hertz

      I am the only person in my family with T1D. I do not have biological children. My sister probably wood screen for autoantibodies but has never been asked. She has no children.

      3 years ago Log in to Reply
    29. Tgabecker

      I acquired T1D late in life as result of my cancer immunotherapy. No previous T1D in my family lineage.

      1
      3 years ago Log in to Reply
    30. Steven Gill

      Since our youngest is also a TYPE 1, a second brother was just diagnosed diabetic. With that history he was screened but is negative. Medically/diet controlled a1C in low 6 range.

      3 years ago Log in to Reply
    31. Molly Jones

      I chose other as my answer is I don’t know.
      I have family members with autoimmune conditions, but not type 1 diabetes. They have adult children.
      An interest may be greater if this were free or involving clinical trials to see how many diabetes conditions are properly diagnosed and could be better managed or hopefully prevented soon. Many family members do not have great interest in general health or good insurance.

      3 years ago Log in to Reply
    32. PamK

      My children have been screened, but my siblings have not been. At least to the best of my knowledge.

      3 years ago Log in to Reply
    33. LizB

      One sister & myself have T1. I was diagnosed when I was 19 and my sister when she was in her 40s. We are both in our 50s now. Our siblings are all older than us and all of the nieces/nephews are adults. Last time I looked I don’t think anyone was eligible for screening through TrialNet. I’m not sure if any of my siblings or nieces/nephews would want to do it.

      3 years ago Log in to Reply
    34. T1D4LongTime

      After 56 years of T1D, I see no reason to be screened for autoantibodies. My son is 41 and has not ever had indications of T1D. He is not interested in being screened (his preference not mine)

      3 years ago Log in to Reply
    35. Dana Lamb

      My family is not aware of the screening and where to get screened.

      3 years ago Log in to Reply

    If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies? Cancel reply

    You must be logged in to post a comment.




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