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    • 2 hours, 10 minutes ago
      ChrisW likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      I turned down a CGM study because the sponsors, a manufacturer, claimed the data would belong to them exclusively. While I may grant use of the data, its mine thank you!
    • 2 hours, 10 minutes ago
      ChrisW likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      Requests for my personal information that I don't want to share online.
    • 6 hours, 47 minutes ago
      KSannie likes your comment at
      How confident do you feel understanding informed consent documents for research studies?
      I understand enough to decide not to participate in the study ... sometimes.
    • 7 hours, 24 minutes ago
      Natalie Daley likes your comment at
      How confident do you feel understanding informed consent documents for research studies?
      My fear and concern with those who answer "very confident" and are non-lawyers is that you may be unaware of what Facebook, Google, Amazon, Nvidia, Apple, Microsoft, et al do with your data. As the old saying goes about the capitalist, "Here. Take it. How much money will you give me for this rope you are going to hang me by?"
    • 1 day, 7 hours ago
      Anita Stokar likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      While I'm not sure if I had a significant chance of being selected, I declined to further pursue the potential for being considered for the Vertex islet cell study, due to it preventing me from donating blood products for at least the duration of the trial. I'm a passionate platelet donor, and I am okay with living with diabetes in order to be able to continue doing so regularly.
    • 1 day, 18 hours ago
      kilupx likes your comment at
      How often do you experience device fatigue (feeling tired of wearing or managing devices)?
      My only fatigue is figuring out where to put my next pump site since pumping 28 years now
    • 1 day, 18 hours ago
      kilupx likes your comment at
      How often do you experience device fatigue (feeling tired of wearing or managing devices)?
      I get itchy rashes from the tandem canula adhesive, so that makes it more of a burden. I dislike having to report to dexcom when their devices fail. and i do feel tired of wearing a device when i see the double down or double up arrow.. they cause a lot of panic and over compensation (on my part). I'd say.. I'm weary, and honestly feel a little judged, every time I hear a beep or see a high or low number. but that's not the device's fault. I'm happy to use the devices though, they keep me closer to ok! especially during sleep.
    • 2 days, 2 hours ago
      lis be likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      Actively thinking about things is only during pump,CGM changes, meals, activities. Which is not many hours in a day. However, it is always running in the back of mind.
    • 2 days, 2 hours ago
      lis be likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      Probably just 1 hr most days. But better questions are: (1) how many times per day & (2) how taxing/draining is it?
    • 2 days, 2 hours ago
      lis be likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      I'm not sure this is something that can be quantified in hours per week? 5 minutes here, 10 minutes there multiple times throughout every day, it adds up. But I don't keep track...it's just life
    • 2 days, 2 hours ago
      lis be likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      For the last 52 years living with T1, my diabetes care is always on the forefront of everything I do.
    • 2 days, 6 hours ago
      Gerald Oefelein likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      I’m either too old or live too far away. I’m 72 and live in Arizona
    • 2 days, 6 hours ago
      Gerald Oefelein likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      Quite a few opportunities I would have considered I aged out.
    • 2 days, 7 hours ago
      kristina blake likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      It was to test one of the new CGMs that measures ketones in addition to blood sugar. I live in Houston and the research was in Austin. Would have involved many trips to Austin that basically would have spent the promised stipend. In addition, they were going to raise and lower my BS to see if the CGM would measure the ketones correctly. That sure didn't sound enjoyable so I passed.
    • 2 days, 7 hours ago
      kristina blake likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      While I'm not sure if I had a significant chance of being selected, I declined to further pursue the potential for being considered for the Vertex islet cell study, due to it preventing me from donating blood products for at least the duration of the trial. I'm a passionate platelet donor, and I am okay with living with diabetes in order to be able to continue doing so regularly.
    • 2 days, 7 hours ago
      Ahh Life likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      I was declined because they only accepted diabetics with an ac1 of 7 or above.
    • 2 days, 8 hours ago
      Lawrence S. likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      Unfortunately, I neither have the time or financial resources to travel out of state.
    • 2 days, 8 hours ago
      Lawrence S. likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      While I'm not sure if I had a significant chance of being selected, I declined to further pursue the potential for being considered for the Vertex islet cell study, due to it preventing me from donating blood products for at least the duration of the trial. I'm a passionate platelet donor, and I am okay with living with diabetes in order to be able to continue doing so regularly.
    • 2 days, 8 hours ago
      Lawrence S. likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      It was to test one of the new CGMs that measures ketones in addition to blood sugar. I live in Houston and the research was in Austin. Would have involved many trips to Austin that basically would have spent the promised stipend. In addition, they were going to raise and lower my BS to see if the CGM would measure the ketones correctly. That sure didn't sound enjoyable so I passed.
    • 2 days, 8 hours ago
      Beckett Nelson likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      While I'm not sure if I had a significant chance of being selected, I declined to further pursue the potential for being considered for the Vertex islet cell study, due to it preventing me from donating blood products for at least the duration of the trial. I'm a passionate platelet donor, and I am okay with living with diabetes in order to be able to continue doing so regularly.
    • 2 days, 22 hours ago
      Bruce Schnitzler likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      Actively thinking about things is only during pump,CGM changes, meals, activities. Which is not many hours in a day. However, it is always running in the back of mind.
    • 3 days ago
      Ahh Life likes your comment at
      How important is it to you that research studies include participants who reflect diverse ages, races, and backgrounds?
      Backgrounds matter to a surprising degree. The zip code you live in is better predictor of your heart disease risk than your LDL cholesterol level.
    • 3 days, 3 hours ago
      TEH likes your comment at
      How important is it to you that research studies include participants who reflect diverse ages, races, and backgrounds?
      Backgrounds don’t matter, but ages and races should be considered as those would be factors that could affect outcomes of study. Not diversity for diversity sake, but testing to make sure therapies can work on everyone.
    • 3 days, 3 hours ago
      TEH likes your comment at
      How important is it to you that research studies include participants who reflect diverse ages, races, and backgrounds?
      A civilization that does not care about others isn’t truly civilized.
    • 3 days, 3 hours ago
      TEH likes your comment at
      How important is it to you that research studies include participants who reflect diverse ages, races, and backgrounds?
      Even though we are all one in the human race, we all have a unique physiology. The more people with diverse genders, ages, and races will be the most informative.
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    For caregivers of children with T1D, do you have any special accommodations available from your child’s school? For adults with T1D, did you have special accommodations when you were in school?

    Home > LC Polls > For caregivers of children with T1D, do you have any special accommodations available from your child’s school? For adults with T1D, did you have special accommodations when you were in school?
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    If you were diagnosed with T1D as an adult, on a scale of 1-5, how easy or difficult was it to find an endocrinology clinic near you? (1 = the easiest, 5 = the most difficult)

    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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    30 Comments

    1. Britni

      My parents sorted all that out but as far as I’m aware: I had permission to wander the halls without a pass (so I could get to and from the nurses’ office when I needed to), carry a backpack with me in middle school (everyone else had to keep theirs in their lockers, but I needed to keep snacks handy), and I was allowed to eat during standardized tests. By senior year of high school I was also allowed to make up time lost during testing due to treating high or low blood sugars. That wasn’t officially an accommodation, as far as I knew, when I was younger but a couple teachers fudged it for me because they felt bad that I’d lost time.

      1
      4 years ago Log in to Reply
    2. George Hamilton

      My diagnosis came during my junior year in college. The college dining hall menu had only a single “standard” meal for all students, but for me and other students with specific diet restrictions, the school had a diet table with a variety of choices. It worked well.

      4 years ago Log in to Reply
    3. lis be

      I clicked the wrong button! I did have type 1 in school, but I do not remember having accomodations.

      4 years ago Log in to Reply
    4. Neal Van Berg

      When my son was in Elementary school in Albuquerque NM I worked with a group of parents who had children with type 1.
      We arranged to have the children guaranteed the ability to carry and eat glucose tablets at their discretion as well as testing their blood sugar, injecting insulin or seeing the nurse. There were also written instructions informing substitute teachers of these rights.
      My son is now thirty three so this was 20 + years ago.
      With cgms and pumps it must be easier for a young type 1 to take care of themselves at schoo.

      1
      4 years ago Log in to Reply
    5. Jneticdiabetic

      I was diagnosed as a freshman in college. Only special accommodation I can recall was for an exercise physiology class where I got an ok to stop a treadmill test early if I got low.

      4 years ago Log in to Reply
    6. AnitaS

      I don’t remember having special accommodations when I was diagnosed in the third grade, but I know I could have eaten anytime I felt that my sugar level was low.

      4 years ago Log in to Reply
      1. AnitaS

        I was diagnosed in 1973 so there was no blood testing and I didn’t even give myself a bolus injection when I ate since the “regular insulin” was still working on my blood sugar well into the early afternoon.

        4 years ago Log in to Reply
      2. cynthia jaworski

        pretty much the same in my case (fifth grade). The teachers knew, but nothing special seemed to be needed.

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

      I had T1D in graduate school. I had no accommodations.

      4 years ago Log in to Reply
    8. Mary Dexter

      I was 48 and substitute teaching when I was diagnosed. The Americans with Disabilities Act did prevent my losing an assignment monitoring exams when my pump beeped (now on MDI, not because of that).

      1
      4 years ago Log in to Reply
    9. connie ker

      Our son was #3 type 1 diabetic in our family unit. He was diagnosed in Jr. High and had a school nurse who helped him daily. High School was the same help with a school nurse. By college, he was on his own. His father was one of the longest living T1Ds in the country and I was diagnosed with LADA 24 years ago, not in school. CGMs are a tremendous help to me living alone.

      1
      4 years ago Log in to Reply
    10. LizB

      I was diagnosed in college and didn’t request any special accommodations.

      4 years ago Log in to Reply
    11. jeredb

      I was diagnosed as a freshman in high school and had lunch accommodations to avoid sugar and to get the required calories. At that time I counted calories and avoided sugar rather than focusing on carbs as it is now. This was almost 30 years ago. I also had permission to treat lows and check blood sugars as needed. No special accommodations in college though.

      4 years ago Log in to Reply
    12. Karen Newe

      Like half of new T1 diagnoses I was diagnosed as an adult, long after school. Glad I did not have to deal with all that comes with that.

      4 years ago Log in to Reply
    13. Mick Martin

      Personally, I didn’t have diabetes when I was at school, but a younger sibling, who also developed type 1 diabetes, some 20 years prior to I, was ‘shipped out’ to a ‘specialist home’ for type 1 diabetics. (This was some 50+ years ago. Schools, at that time, over here in the UK, at least, weren’t so au fait with caring for type 1 diabetics.)

      4 years ago Log in to Reply
    14. KCR

      I accidentally clicked “other” when I meant to choose “n/a” since I was diagnosed as an adult.

      4 years ago Log in to Reply
    15. Sue Herflicker

      I had no accommodations for my sons while they were in school! And I was not diagnosed until I was 56 with LADA.

      4 years ago Log in to Reply
    16. Janis Senungetuk

      I was dx in the 3rd grade in 1955. The “accommodations” were punitive. I was not allowed to join classmates for birthday, Halloween and Valentine’s Day parties. The school nurse would call my mother to take me home if I was experiencing a low. Throughout my public school years it was all my responsibility.

      4 years ago Log in to Reply
    17. Bob Durstenfeld

      I started school in the 1960’s. No one had thought of, or considered accommodation back then. I remember some days being low and stumbling to lunch. I was on one shot a day of U40 beef insulin injected from a glass syringe and HUGE steel needle that had to be hand sharpened. I love my pump and CGM.

      5
      4 years ago Log in to Reply
      1. Melinda Lipe

        Me too!

        1
        4 years ago Log in to Reply
      2. ConnieT1D62

        I remember those days too!

        4 years ago Log in to Reply
    18. Donald Cragun

      I was diagnosed when I was a freshman in high school in 1966. I was excused from gym class and kicked off of the basketball team.

      4 years ago Log in to Reply
    19. Melinda Lipe

      Diagnosed in 1966 when I was 9, the word accommodation was not used. My schools understood and cooperated with my mother to help care for me so I could continue in school. No school nurses, I knew to ask to go to the office and my teachers knew to send me there if I was not acting right. Neighborhood schools in action.

      3
      4 years ago Log in to Reply
    20. Chris Deutsch

      I was diagnosed at age 14, so had T1D throughout high school & college. I do not remember any accommodations being given in classes or in sports.
      However, that was in the late 1960’s, before self-monitoring meters or multiple daily injections. I saw my doctor every few months, and had a lab- drawn blood sugar prior to the appt, which I never considered representative of anything except the few hours prior to the test.
      It’s amazing any of us survived!

      2
      4 years ago Log in to Reply
    21. KarenM6

      No such thing as accommodations when I was in school… I suppose the nurse might have helped if I had asked for help, but she wasn’t tasked with doing anything for me… it was all on me.

      2
      4 years ago Log in to Reply
    22. PamK

      I was diagnosed at a young age, but my caregivers are now my spouse and adult children. They were not around when I was a child! I know that my mother did make the schools I went to aware that I had diabetes, but I do not know what accommodations were in place other than that I was allowed to sit in the hallway to eat my morning snack and/or go to the nurse if I felt like my blood sugar was dropping. So, I answered N/A.

      4 years ago Log in to Reply
    23. Lloyd Lowe

      1968, so no accommodations whatsoever.

      1
      4 years ago Log in to Reply
    24. ConnieT1D62

      1960s and early 70s – no special accommodations other than I was allowed to keep sugar cubes wrapped in aluminum foil in my purse and a bottle of Karo syrup or maple syrup in a cloak room supply cabinet during grade school and in my locker during high school. My HS gym teacher kept OJ in a little fridge in her office – her dad was a T1D and she knew me from when she was a camp counselor at the diabetes kids camp I attended in my youth.

      4 years ago Log in to Reply
    25. Cheryl Seibert

      I was a first grader when I was diagnosed in the mid-60s. The only ‘accomodation’ in grade school was that I was allowed to go to the nurses station if my sugar dropped (no CGM those days…. so it was usually me stumbling around in the classroom!). In junior high (called middle school these days), I was allowed to go to my locker for scheduled snacks outside of our 1 timeslot to go to lockers during the day. Things are so different and I think easier these days.. Imagine being able to just eat a snack or take a bottle of Powerade to class!

      4 years ago Log in to Reply
    26. Michelle Saunders

      My teachers kept oranger juice cans in the classroom. When needed I would tell them and I could get one. Once I got middle school they were kept in the office, and I could go get one as needed. In high school my grandma worked there so my low treatments were kept in her office in the library.

      4 years ago Log in to Reply

    For caregivers of children with T1D, do you have any special accommodations available from your child’s school? For adults with T1D, did you have special accommodations when you were in school? Cancel reply

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