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    • 7 hours, 22 minutes ago
      Cecilia Yamamoto likes your comment at
      At T1D Exchange, we work to improve the lives of people with T1D through research. If you could ask a T1D scientist anything about research, what questions would you want answered? Share in the comments, and your question may be featured in an upcoming article!
      Why aren't there more studies on heart disease risk with only T1Ds? I have read peer reviewed medical articles that confirm that T1Ds were not studied exclusively in statin research. We were advised to be treated with statins even if our cholesterol was excellent and there were no other risk factors. I suffered from elevated A1c, weight gain, insulin resistance, extremely low cholesterol which led to vitamin D deficiency which caused respiratory problems and inability to exercise or enjoy leisure activities due to breathlessness and muscle pain. Doctors believed that any symptoms reported by patients were due to the "Nocebo effect" despite my improvement when I didn't take statins for six months when I forgot to refill my prescription! I suffered these side effects from 2002-2016 when I finally found a doctor who took me seriously. We need to be treated as individuals with T1D, not treated based on studies on the majority of T2 studies.
    • 8 hours, 29 minutes ago
      Lenora Ventura likes your comment at
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes, my dad had T1. My diagnosi made him and my mom so sad. I tried hard to make it no big deal so they wouldn’t worry.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 8 hours, 30 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
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    If you have never participated in a T1D research study that tested out a potential new device, drug, process, or other intervention, what stops you from participating? Select all that apply to you.

    Home > LC Polls > If you have never participated in a T1D research study that tested out a potential new device, drug, process, or other intervention, what stops you from participating? Select all that apply to you.
    Previous

    If you have gone swimming while using an insulin pump that has to be disconnected while you are in the water, how do you manage your insulin while swimming?

    Next

    Diabetes burnout – feeling run down and not managing your diabetes in the way you normally would – happens for many people living with T1D. Which statement best describes the way you currently feel diabetes burnout impacts you?

    Sarah Howard

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    22 Comments

    1. Natalie Daley

      Apparently at 74 I’ve outlived my usefulness.

      5
      7 months ago Log in to Reply
      1. Louise Robinson

        I am in my early 70’s. I’ve dealt with Type 1 diabetes since 1976. Wish someone would conduct a trial on geriatric diabetics who have been dealing with it a long time….in my case, quite successfully, I think….although aging presents additional challenges.

        14
        7 months ago Log in to Reply
    2. Lawrence S.

      All of the studies that I have seen exclude anyone 65 years old, or older. Also, years ago I was put off about my personal information being shared with many possible unknown interested parties. And, I had no control over where my personal information would end up.

      1
      7 months ago Log in to Reply
    3. Keith LeMar

      Two reasons I don’t participate: 1) I live too far from the testing centers; 2) I don’t meet the criteria to be selected to participate. This is probably the reason why most T1D’s do not participate, they do not meet the criteria.

      7 months ago Log in to Reply
    4. Mary Dexter

      Many of the studies are for recently diagnosed T1. Since adults are usually initially misdiagnosed, they miss the window when they could benefit. Organizations such as the ADA and the JDRF, as well as this one, need to do a better job ensuring that ALL doctors accept that adults can develop T1.

      2
      7 months ago Log in to Reply
    5. Brian Vodehnal

      I signed up for an islet cell trial but was denied because I’m O+…. Never told why that matters.

      7 months ago Log in to Reply
    6. Dennis Dacey

      I have participated in several [many?] studies over the years; some that resulted in very significant new life-saving advances. Some research projects for which I volunteered my body were unable to advance significant results.
      I will venture to say, that all PwD reading this have used, or are currently, and benefitted from my willingness to contribute the one body I have. Yes, I am now midway through my seventh decade living with diabetes.

      9
      7 months ago Log in to Reply
      1. Drina Nicole Jewell

        You are a hero. Thank you 😊

        5
        7 months ago Log in to Reply
    7. Kevin McCue

      I have participated in the past but my spouse worries about possible side effects and asked me not to participate again. So out of respect and love for my family I no longer participate.

      7 months ago Log in to Reply
    8. cynthia jaworski

      In the past I have tried quasi-off label use of SGLT2 inhibitors. I have looked for trials of C-peptide, and am interested in other possibilities such as amylin. No one wanted me for islet cell transplant studies, but I was more than willing.

      7 months ago Log in to Reply
    9. Lynn Smith

      I have participated in studies in the past.
      But most of the ones I hear about now want patients with higher A1c. So, I selected N/A, but I guess I should have selected the choice about exclusion requirements.

      7 months ago Log in to Reply
    10. Sonya Onyx

      Currently in my first study! Previously, if I met criteria I was too far away. I’m hoping zoom technology will change that!

      7 months ago Log in to Reply
    11. Janis Senungetuk

      I have participated in studies including the clinical trial for Lantus insulin and the Joslin Medalist studies. I’m still interested and willing but at 75, after 67 years of life with T1D, the researchers are no longer interested.

      2
      7 months ago Log in to Reply
      1. ConnieT1D62

        Hah! the researchers should be more interested in those of us with T1D longevity! Especially since many of us diagnosed as children or in youth or as young adults are living long lives with T1D – well into our 60, 70, and 80s and some beyond that!

        I am of the opinion, based on personal experience and clinical observation, that T1 PWDs who are mindful about self-care habits and lifestyle choices are much healthier than people who don’t have a chronic endocrine dysfunction like insulin deficiency to rule their lives. I am in better health and have outlived many Baby Boomer friends and contemporaries because of what living with T1D has taught me. I consider it a blessing in disguise!

        1
        7 months ago Log in to Reply
      2. sweet charlie

        I agree ladies.. 69/90 years.. They tell me I’m too old.

        7 months ago Log in to Reply
    12. Larry Martin

      Surveyed but never got chosen to participate.

      7 months ago Log in to Reply
    13. Pauline M Reynolds

      I marked “Other” but should have marked “I typically meet the exclusion criteria…” My age (83) is the culprit.

      7 months ago Log in to Reply
    14. vbaum1956

      Mostly I guess because of my age, I guess, according to the answers above. Have had T1 since 1966 and am turning 66 later this year. I’d always like to hear about new products to use.

      7 months ago Log in to Reply
    15. Jneticdiabetic

      I participated in an early closed loop trial in the hospital and multiple blood draw studies. The JDRF recently sent out a communication that said 80% of T1D clinical trials are delayed or fail due to a lack of volunteers. Joining a clinical trial is a way to be an active participant in the quest for better T1D treatments and that long-awaited cure.

      7 months ago Log in to Reply
      1. Jneticdiabetic

        You can search for clinical trials that may be a good match for you on clinicaltrials.gov.
        The JDRF also has this handy tool that let’s you search for T1D trials based on age, target location, miles willing to be travel, etc:
        https://www.jdrf.org/impact/research/clinical-trials/

        7 months ago Log in to Reply
    16. qachemist

      I was diagnosed at age 65 based on annual blood work. This is new, not just undiagnosed for years. But studies never include those who are “older.” Our metabolism is different, chronic conditions of aging may appear, etc.
      How can we be treated properly and manage our condition/disease if we aren’t of interest to anyone.

      7 months ago Log in to Reply
    17. Cheryl Seibert

      I do not live close enough to major cities. I usually met the criteria up until I passed 60 years old. My major reason for not participating is that I am caregiving a very elderly relative now on Hospice. I cannot travel away for the clinicals nor can I risk being ill. My husband also has health problems, so it’s unlikely I will participate in the near future.

      7 months ago Log in to Reply

    If you have never participated in a T1D research study that tested out a potential new device, drug, process, or other intervention, what stops you from participating? Select all that apply to you. Cancel reply

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