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    • 1 day 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, 11 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, 11 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.
    • 1 day, 18 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.
    • 1 day, 18 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?
    • 1 day, 18 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
    • 1 day, 18 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.
    • 1 day, 23 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
    • 1 day, 23 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 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 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 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 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 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 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, 1 hour 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, 15 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.
    • 2 days, 16 hours 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.
    • 2 days, 19 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.
    • 2 days, 19 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.
    • 2 days, 19 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.
    • 2 days, 22 hours ago
      Laurie B likes your comment at
      How important is it to you that research studies include participants who reflect diverse ages, races, and backgrounds?
      It depends on the research. Some research questions deal with youth and T1D. More needs to be done with aging populations with T1D, and LADA. Most all the research should have diversity of gender and race unless the question is involved with a particular race or gender. But what is the control? The question of inclusion of diversity should always be a part of the development of the study and its what is desired in its findings.
    • 2 days, 22 hours ago
      Marty 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 ago
      Lawrence S. likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      I put 5-10, but don't really know. I have auto-generation and install updates to both DIY Trio and Loop each week, that takes minimal time. I participate in four different on-line groups (FUD [daily], BeyondT1 [once in awhile], LoopZulipChat [on Loop development/questions], and Trio Discord [development/questions on Trio]. I also look through Facebook groups every once in awhile for Loop and Trio. Then there's the before meal/snack dosing of insulin (requires carb counting/estimating and carb entry) and then correction dosing as needed. When I think of question appropriate for my Endo, I write it down so I don't forget. I get the added bonus of dealing with EPI (roughly 30% of T1s have it/get it) which necessitates determining my fat intake and treatment with enzyme pills so I can digest food (mostly fats, but also protein and carbs). There's a lot to it that gets "normalized" in my routine...most of the time! Once in awhile, my mind "forgets" one or the other briefly.
    • 3 days ago
      Lawrence S. likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      That’s a tricky question, somewhere between always and sometimes. After about 50 years of T1D I think I run on autopilot. But having said that everything one eats or if you move around or sit around must be taken into account. Even with CIQ I need to run different basal programs…..inactive to highly active….or am I eating larger quantities of carbohydrates…many variables that we automatically adjust for.
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    Have you (or your loved one with T1D) also been diagnosed with Exocrine Pancreatic Insufficiency/Pancreatic Exocrine Insufficiency (EPI/PEI)?

    Home > LC Polls > Have you (or your loved one with T1D) also been diagnosed with Exocrine Pancreatic Insufficiency/Pancreatic Exocrine Insufficiency (EPI/PEI)?
    Previous

    What advice would you give to a caregiver of a teenager with T1D?

    Next

    If you use a CGM, in what situations has a sensor accidentally been pulled off your body? Select all that apply and share your own 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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    9 Comments

    1. Ahh Life

      Ignorance is bliss.

      So naturally I go to Google. Unfortunately, Google has decided to improve search by going to Power Point pictures readable by 4-year olds for rather complex subjects. I firmly believe that Power Point will be the death of civilization. And I am holding Bill Gates personally responsible.

      A better explanation is: https://www.medicalnewstoday.com/articles/exocrine-pancreatic-insufficiency-diabetes-link#summary

      6
      3 years ago Log in to Reply
    2. Lawrence S.

      Thanks, Ahhh Life, this is a new one for me. I read some of article you posted. Thanks.

      1
      3 years ago Log in to Reply
    3. Tom Caesar

      Oh swell, another thing to fret about!

      3
      3 years ago Log in to Reply
    4. Natalie Daley

      I never heard of this.

      1
      3 years ago Log in to Reply
    5. MARIE

      I believe this is of primary concern to those who acquired diabetes when they lost their pancreas to disease. It’s not something that typically follows T1D (unless the person has lost all or part of their pancreas.)

      Unfortunately, not all doctors understand it. The ‘cure’ is to take enzymes with every meal for the rest of your life. But my DH was a rehab hospital when he went back on solid food and after I insisted that enzyme replacement therapy was necessary, the doctor there put him on 6,000 units of pancreatic enzymes once a day. Once we got DH to a GI doctor, we found that the correct dose was 72,000 units with every meal. It’s three capsules with every meal but it keeps him symptom free. I suspect, given the choice, he’d prefer the EPI over T1D any day.

      1
      3 years ago Log in to Reply
    6. KarenM6

      No for me… but, no doctor has talked to me about it, nor have I been tested for it.

      1
      3 years ago Log in to Reply
    7. Molly Jones

      I have not been diagnosed with this but have gastroparesis which explains my sporadic but often very delayed rising in BG after eating.
      When I look this condition up on pubmed it is continuing medical education in 2022 and many doctors are not aware of it, and it is often misdiagnosed or not noticed.

      3 years ago Log in to Reply
    8. Frederick Schulz

      I was just diagnosed recently, after an MRI , ultrasound exam and , starting out several months ago, in a stool test that showed a very low level of enzymes. The endocrinologists have been seeking the cause of my IBS for months, if not years, and finally came upon this, after many other exams, tests, diatary changes, etc. I have been using, since it was first suspected over a month ago, an enzyme replacement medication, Creon, taken whenever I eat something. It has certainly improved my IBS, although not eliminated it. Part of the problem may be mine, in taking the medication as prescribed, and eating a better diet. I am still working with the doctors on this.

      3 years ago Log in to Reply
    9. T1D4LongTime

      No. Never heard of these conditions.

      3 years ago Log in to Reply

    Have you (or your loved one with T1D) also been diagnosed with Exocrine Pancreatic Insufficiency/Pancreatic Exocrine Insufficiency (EPI/PEI)? Cancel reply

    You must be logged in to post a comment.




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