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    • 2 hours, 45 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, 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, 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, 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, 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, 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, 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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    How much do you think your relatives outside of your immediate family know about T1D? Select all of the statements that you think are true for you.

    Home > LC Polls > How much do you think your relatives outside of your immediate family know about T1D? Select all of the statements that you think are true for you.
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    For how many years have you (or your loved one) been living with T1D so far?

    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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    15 Comments

    1. Janice B

      Sad but true that the majority of my family does not understand the difference between T1D or T2D. Or what my devices or insulin does. They think my pump takes care of everything.

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

      Some of my relatives think I should be over this, as if it were a bad cold, and resent that it still inconveniences them.

      1
      5 years ago Log in to Reply
    3. Ernie Richmann

      I am type 1 diagnosed after age 57. Some doctors insist I am type 2. My endo says I am type 1.

      5 years ago Log in to Reply
    4. T1DGJ

      When the subject arises, I say, “T2 is most people you know. They still produce some insulin. Either not enough, or their body doesn’t use it well. My T1 means my body No longer produces insulin. So when you eat, your body sends insulin to turn your food into energy. My body does not make any, so I have to “shoot it in” to process my food.”

      5 years ago Log in to Reply
    5. Sahran Holiday

      Type 1, few beyond my immediate family know. Don’t discuss it. Better things to talk about.

      5 years ago Log in to Reply
    6. Sherolyn Newell

      I was diagnosed TID around 55 years old, so it’s new to my family. I have one sister who still asks me “can you eat…?” I think my three sisters pretty much understand it though, my sons as well. Extended family doesn’t, except the ones that have asked me questions about it.

      5 years ago Log in to Reply
    7. Denise Lyons

      Diagnosed at 50 so this is new for even my immediate family. I’ve known the basic differences between type 1 and 2 but before my diagnosis I was pretty ignorant of diabetes tech so I don’t fault my family for not understanding it. Definitely alot of people think my pump handles it, before diagnosis that’s what I thought as well. So I try to educate because just over a year ago I was equally as ignorant.

      5 years ago Log in to Reply
    8. Janis Senungetuk

      Their knowledge and interest is very limited.

      1
      5 years ago Log in to Reply
    9. ConnieT1D62

      I have often been the one to explain and educate my immediate and extended family members about diabetes – the difference between T1 and T2, the role of insulin in the body, what a person with diabetes can eat, that diabetes of all types (T1 or T2) can occur in adults and children of all ages and at any age – from as young as infancy into ripe old age, and that T1 diabetes does not turn into T2 diabetes when a child goes into adulthood.

      In my family of origin, there is a history of youth onset T1 diabetes and LADA; as well as youth onset pre-diabetes and T2 diabetes, and adult onset pre-diabetes and T2 diabetes on both sides extending through first, second and third cousins. Despite a full spectrum of diabetes there still a lot of denial, false beliefs and misunderstanding amongst some of my relatives.

      5 years ago Log in to Reply
    10. connie ker

      When I was trying to figure out what was happening to my body at the age of 49 other than menopause, even the Drs. are very confused about the difference between type 1 and type 2. I was considered a type 2, type 1 and 1/2, and a type 1 finally with LADA. 23 years later LADA is now the diagnosis term that was misunderstood. When in the hospital or nursing home care, type 1s go by the same chart as type 2 for insulin management. This should be changed as well.

      2
      5 years ago Log in to Reply
    11. Brandon Denson

      I believe they have a general idea about my devices and insulin usage but don’t necessarily know the exact reason or process for using the technology or what taking insulin actually does for me.

      1
      5 years ago Log in to Reply
    12. Molly Jones

      I would say that about 20 percent of my family understand the difference of type 1 and 2 and what my devices do, the same for the effects of insulin. There are a few healthcare workers and others who have type 2.

      5 years ago Log in to Reply
    13. Amy Jo

      I once had an uncle tell me that if I eat enough beans, it will cure my T1. I told him I’ll keep taking insulin in the meantime.

      5 years ago Log in to Reply
    14. Wanacure

      I have many relatives, but don’t know them. Outside my brother and a surviving cousin, I’ve no idea what my distant relatives think or know about anything. I know I have distant relatives on the eastern US, southern US, Canada, and west coast and probably Ireland, Scotland, and England. That’s why I checked “other.”

      5 years ago Log in to Reply
    15. keith johnson

      I have two paternal cousins with type 1, a paternal aunt, an aunt by marriage with type 1. A dad who and brother who are type 2 diabetics you control it with meds and insulin. We have a ” diabetes cluster.” Family yearly holiday celebrations and yearly family reunions are like diabetes conventions. We share information. There is not a person over 10 who does not know something about diabetes.

      5 years ago Log in to Reply

    How much do you think your relatives outside of your immediate family know about T1D? Select all of the statements that you think are true for you. Cancel reply

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