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    • 4 hours, 8 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.
    • 4 hours, 13 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.
    • 4 hours, 20 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.
    • 1 day, 22 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, 22 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, 22 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, 23 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, 1 hour 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, 4 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, 5 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, 6 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, 7 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, 7 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, 7 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, 7 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, 7 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, 7 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, 7 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, 23 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, 23 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, 1 hour 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, 1 hour 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, 3 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, 5 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, 5 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?
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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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    33 Comments

    1. Wanacure

      The only close family member is a paternal cousin. She isn’t even interested in getting her DNA tested because “it may reveal some bad disease tendency.” She has children and a grandchild who could be tested. Her older sister and her cousins (me & my brother) all had/have T1D by age 15.

      3 years ago Log in to Reply
    2. Wanacure

      I answered “Other” because I DO wish my cousin & her offspring WOULD get screened for antibodies.

      3 years ago Log in to Reply
    3. Kathleen Begbie

      Several family members have been diagnosed with T1D or T2D

      3 years ago Log in to Reply
    4. Gary Rind

      my siblings & parents are older (like me) and they’ve never expressed any interest in getting tested. my nieces and nephews have never said anything either

      1
      3 years ago Log in to Reply
    5. Lawrence S.

      No. As far as I know, no one in my family has been tested for T1D autoantibodies. I don’t believe any of us has ever thought of it. Also, I don’t know what purpose it would serve. I am 70 years young. My siblings are around my age. My daughter, neices and nephews are all grown and scattered around the USA.

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

        Also, no one else in my family has T1D.

        3 years ago Log in to Reply
      2. Wanacure

        But, Lawrence, how can you or they be sure until they’re tested for antibodies?

        3 years ago Log in to Reply
    6. HMW

      My family (parents and sibling) participated in a study around 30 years ago before screening was something you could request.

      3 years ago Log in to Reply
    7. Kristen Clifford

      First of all, I’ve said it before, and I’ll say it again: stop asking questions about family screenings for antibodies!!!! This is seriously like the tenth time this question has come up. There are plenty of other questions about T1D you can ask. Second, there should be another option to the effect of “I have not discussed antibody screenings with my family,” which is the category under which I fall.

      4
      3 years ago Log in to Reply
      1. Samantha Walsh

        Hi Kristen, thanks so much for your feedback. We do plan to continue questions and education on T1D screening. The constantly evolving clinical trials and FDA-approved therapies that offer the potential to intervene, delay —— and hopefully some day prevent —— T1D are only effective if children are being screened for the earliest stages of T1D. Without screening, we cannot delay or prevent T1D.
        We do offer “No, my family members have no been screened” as an option.
        We appreciate your passion as a person affected by T1D and hope you enjoy our other daily questions.
        All the best,
        The T1D Exchange team

        6
        3 years ago Log in to Reply
    8. pru barry

      Just my children, all grown and all clear:*)!

      3 years ago Log in to Reply
    9. Chrisanda

      I have LADA, and the idea of screening has not come up, either by me or my adult children. I guess I need to present the opportunity to them so they can make the decision.

      1
      3 years ago Log in to Reply
    10. William Bennett

      I have a huge extended family–siblings, cousins, kids and grandkids–and afaik no one else has it, with the exception of my first cousin’s daughter. I was told at diagnosis back in 1983 that T1 doesn’t necessarily track in families the way T2 does, and that certainly seems to be true in my case. So it doesn’t really seem necessary.

      3 years ago Log in to Reply
      1. Wanacure

        William, that was then. This is now! Please read Samantha’s reply to Kristen! 😎

        3 years ago Log in to Reply
    11. Richard Vaughn

      I was born in 1939 and had many childhood illnesses. Three different kinds of measles and tonsils removed before I was 5 years old, then mumps and chickenpox when I was 5. While recovering from the mumps and chickenpox, I began showing the symptoms of very high blood sugar. Three doctors examined me and they were not able to make a diagnosis. I had lost much weight, and I had stopped eating. I did not have an appetite. It was almost impossible for me to walk. A fourth doctor had my blood tested and he made the diagnosis. While receiving pork insulin I finally began to recover a few days after my sixth birthday.
      I did not have ant relatives with diabetes. I think the childhood diseases caused internal damage and that was the cause of my diabetes. At the present time there are still no type one diabetics among my relatives.
      I do not believe it is necessary for my children and grandchildren to be screened for T1D autoantibodies.

      1
      3 years ago Log in to Reply
      1. Wanacure

        Richard, why not suggest they be tested to be sure? Why not let them make the decision? ❤️😎

        3 years ago Log in to Reply
    12. KCR

      My brother and I have never talked about this.

      3 years ago Log in to Reply
    13. Kristine Warmecke

      Only my 2 youngest niece have been screened, middle born about a month after my oldest ones diagnosis. Their Dad & I both have have T1D.

      1
      3 years ago Log in to Reply
    14. Yaffa Steubinger

      I have T1, and when my oldest grandson got T1, the other 3 grandkids got screened. The grandson who’s the brother of the one with T1, showed a strong possibility of being a future T1 diabetic. It sadly came true about a year later.

      1
      3 years ago Log in to Reply
      1. Wanacure

        Aha! So the test was an accurate predictor? Did the doctor (s) suggest any preventive course of action?

        3 years ago Log in to Reply
    15. Karen DeVeaux

      No and no because I got T1D at 47 years old from a virus.

      3 years ago Log in to Reply
    16. Janis Senungetuk

      I’ve previously answered this question. My daughter and my three grandchildren, who are now in their 20’s, have no interest in being screened. I asked them when screening first became available and have repeated my request as my grandchildren grew into their teens. They refuse.

      1
      3 years ago Log in to Reply
    17. Bob Durstenfeld

      I was genetically screened and found to have monogenic Type 1 Diabetes. Not caused by antibiotics, but a gene defect. So does my eldest of three sons and his eldest of two daughters.

      3 years ago Log in to Reply
      1. Wanacure

        ❤️ Good on you for trying, Janis. So often we humans make decisions based on emotions, like fear, not rationality. I guess Freud was on to something. 😎

        3 years ago Log in to Reply
      2. Wanacure

        I wonder how many of us T1Ds have been tested for monogenic diabetes? Theoretically couldn’t this be treated by CRISPR?

        3 years ago Log in to Reply
    18. Mick Martin

      I have 1 brother that was also Type 1 … sadly, no longer with us; 2 first cousins that are both Type 1, and 2 brothers that are Type 2.

      0
      3 years ago Log in to Reply
    19. Jana Wardian

      I’ve not discussed this with family members.

      3 years ago Log in to Reply
    20. Becky Hertz

      I’m sure my sister would be screened, but she ages (64) out of most past screening requests.

      3 years ago Log in to Reply
    21. Molly Jones

      I chose other as I don’t know what family was defined as (extended or primary) and my desired answer was not available.
      I know my brother, the only primary family remaining, would have little interest, but I am unsure of extended family members.

      3 years ago Log in to Reply
    22. AnitaS

      I answered that nobody wants to be screened, but I was answering based on my immediate family. I did let my deceased type-1 diabetic cousin’s 35 year old son know he can be tested for his likelihood of becoming type-1 diabetic. He said he may be tested as he was always curious if he had a chance.

      0
      3 years ago Log in to Reply
    23. Anne Mueller

      In my immediate family, both my son and I are T1D’s. After my son was diagnosed, his older sister was tested for the antibodies, but she didn’t have them. My husband has neve been tested, and neither have my siblings. I have a sister who was diagnosed as Type 2.

      3 years ago Log in to Reply
    24. Joindy23

      As a T1D, if I had children I’d have them screened-but I have none because when I was child-bearing age (20+ years ago), it felt too dangerous. My brother and sister (in their 50s & healthy) don’t seem interested and are presumably safe from T1D at this point.

      3 years ago Log in to Reply
    25. T1D4LongTime

      No, none of my close family has been screened. I have one natural-born son and he has only 1 child. He will not agree to screening (he’s an adult so his decision). My granddaughter is now 18 and can decide for herself if she wants screened. She may be willing.

      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

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