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    • 51 minutes ago
      Amanda Barras likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I follow Katie Beth Hand and Crushingt1 lots of great info on the Eledon trial. I would definitely sign up for the trial if I was eligible.
    • 51 minutes ago
      Amanda Barras likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I'd sign up today!!!!! Have to admit that listening to her describe her "freedom" with "no longer having" T1D makes me jealous!
    • 54 minutes ago
      Amanda Barras likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I was shocked that so many people haven't heard about it. It is all over social media. It looks promising to me. Of course the trial participants need to be followed for awhile as no drug gets approved by the FDA in short time, but so far all of the first 12 trial participants are insulin free and the 1st participant has been insulin free for over 1-1/2 years with no complications that I've heard of.
    • 2 hours, 58 minutes ago
      Anita Stokar likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I'd sign up today!!!!! Have to admit that listening to her describe her "freedom" with "no longer having" T1D makes me jealous!
    • 2 hours, 58 minutes ago
      Anita Stokar likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I follow Katie Beth Hand and Crushingt1 lots of great info on the Eledon trial. I would definitely sign up for the trial if I was eligible.
    • 3 hours, 40 minutes ago
      Ahh Life likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      This question is an advertisement. In my opinion it is a misleading advertisement. Tegoprupart is an immunosuppressant. A trial investigating using the drug with islet cell recipients has barely gotten started. 90-ish percent of all phase 3 drug trials fail. Drug development is hard. I wish them luck at the same time I wish they weren't misleading people about the investigational use of their drug.
    • 4 hours, 43 minutes ago
      Marthaeg likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I'd sign up today!!!!! Have to admit that listening to her describe her "freedom" with "no longer having" T1D makes me jealous!
    • 4 hours, 43 minutes ago
      Marthaeg likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      I follow Katie Beth Hand and Crushingt1 lots of great info on the Eledon trial. I would definitely sign up for the trial if I was eligible.
    • 6 hours, 23 minutes ago
      Gerald Oefelein likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      AI Overview Tegoprubart, an anti-CD40L antibody, is generally safe and well-tolerated, with a cleaner safety profile than traditional calcineurin inhibitors (like tacrolimus) in early trials, specifically showing lower risks of kidney toxicity and diabetes. Common side effects reported include fatigue, headaches, muscle spasms, and potential infections. National Institutes of Health (.gov) National Institutes of Health (.gov) +4 Common Side Effects and Adverse Events In clinical trials, the most frequent treatment-emergent adverse events (TEAEs) observed included: National Institutes of Health (.gov) National Institutes of Health (.gov) +2 Fatigue (approx. 25.9%) Falls (approx. 22.2%) Headaches (approx. 20.4%) Muscle spasms (approx. 11.1%) Upper respiratory tract infections Sleepiness Key Safety Advantages Over Standard Care (Tacrolimus) Tegoprubart aims to avoid the, often, severe, long-term side effects of standard anti-rejection meds like tacrolimus
    • 6 hours, 24 minutes ago
      Lawrence S. likes your comment at
      Have you heard about tegoprupart, an immunosuppressant alternative with fewer side effects than traditional immunosuppressants, now being used for islet cell transplantation?
      No thanks.
    • 1 day, 2 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Without rejection drugs- very likely. With rejection drugs- not a chance.
    • 1 day, 2 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Only if I don't need to take any immunosuppression drugs
    • 1 day, 2 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      All depends on if anti rejection and immunosuppressive medications are needed. If so I would not be interested.
    • 1 day, 2 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      It would depend on the cost and coverage by insurance as well as the requirement for immunity suppressants.
    • 1 day, 2 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Very likely provided immunosuppressants aren't required. Also younger people should receive the treatment first.
    • 1 day, 2 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      as long as it doesn't require immunosuppression, I'm interested
    • 1 day, 2 hours ago
      Gerald Oefelein likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      If it requires immunosuppressive medication I have no interest. I'll continue to manage with insulin.
    • 1 day, 2 hours ago
      Lawrence S. likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Without rejection drugs- very likely. With rejection drugs- not a chance.
    • 1 day, 2 hours ago
      Lawrence S. likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Very likely, especially if stem-cell generated islet cells are transplanted without the need for immunosuppressants. If tegoprubart is needed and is found safe after the trials are complete, then likely.
    • 1 day, 2 hours ago
      Lawrence S. likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Only if I don't need to take any immunosuppression drugs
    • 1 day, 2 hours ago
      Lawrence S. likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      All depends on if anti rejection and immunosuppressive medications are needed. If so I would not be interested.
    • 1 day, 2 hours ago
      Lawrence S. likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      It would depend on the cost and coverage by insurance as well as the requirement for immunity suppressants.
    • 1 day, 2 hours ago
      Lawrence S. likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Very likely provided immunosuppressants aren't required. Also younger people should receive the treatment first.
    • 1 day, 2 hours ago
      Lawrence S. likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      Very likely. Although the simplicity of spifflicating is often overrated. 🤓☝️
    • 1 day, 2 hours ago
      Lawrence S. likes your comment at
      If islet cell transplantation is proven safe and effective, how likely would you be to consider it a treatment option?
      as long as it doesn't require immunosuppression, I'm interested
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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.
    Previous

    Going through puberty is a tough time. Looking back, is there anything you wish you’d known about T1D in puberty that you would like to share with young people today who are going through this transition? Or, if you’re a caregiver, what is a question you’d like to ask the community on how to handle the challenges that come with managing T1D for young people during puberty?

    Next

    What was your most recent A1c?

    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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    19 Comments

    1. Carolann Hunt

      You can explain it over and over and they still choose to not understand. It’s up there with understanding vaccines.

      6
      4 years ago Log in to Reply
    2. M C

      As it doesn’t impact them directly/personally, they don’t care to know or understand anything about the condition…. most don’t even know/remember that I have T1D. Those who do ‘know’ remain blissfully ignorant. Such is life.

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

      Unless they are around a T1D diabetic most of the time, they don’t get it. My relatives know that I am a diabetic. Most don’t know that there is a difference between Type 1 and Type 2. If it is not an immediate part of their lives, they just don’t think about it. I have heard numerous times when I experience a low blood sugar around them, “do you need insulin?” They want to help, but they don’t know what to do.
      Regarding my pump, they know that it pumps insulin … that’s about it.

      4
      4 years ago Log in to Reply
    4. Jane Cerullo

      Bahaha some still think you take insulin for a low. And don’t start me on difference between type 1 and 2. Always telling me what study they read that will cure me.

      5
      4 years ago Log in to Reply
    5. Barbara Bubar

      As a very long-term person with Type 1 and with the addition of both a nephew and a great nephew years later with Type 1 AND a brother-in-law with Type 2, the entire subject of diabetes has been covered in great detail for many years with all of the members in my extended family–up, down and sideways!!!.

      4 years ago Log in to Reply
    6. Ahh Life

      Cruise control / autopilot. Isn’t that what everyone has in their cars and F-22 fighter jets?

      That is the assumption made about tSlim X2 control IQ God-perfect algorithms. Friends, relatives, and even my wife assume now that life is perfect. Oh, well. ┏( ͡❛ ͜ʖ ͡❛)┛

      1
      4 years ago Log in to Reply
      1. Elissa Macher

        Same with me.

        4 years ago Log in to Reply
      2. Wanacure

        One of the critical computer models that was supposed to predict hurricane Ian is baffling meteorologists according to one of the TV news broadcast station I’m watching on 7 Oct 2022.

        4 years ago Log in to Reply
    7. Ernie Richmann

      To be fair I have limited knowledge of the various conditions, medications, and treatments of others in my extended family or of my friends and acquaintances. For those who are interested, I am happy to offer information about types of diabetes, the role of insulin, healthy life style choices, and more.

      3
      4 years ago Log in to Reply
    8. Elissa Macher

      Most of my relatives think that a pump IS an artificial pancreas that never needs to be touched.

      4 years ago Log in to Reply
      1. Karen Newe

        This is one reason why I do not like that term.

        4 years ago Log in to Reply
    9. Janice Bohn

      Sad but most of my extended family do not understand anything about T1D

      4 years ago Log in to Reply
    10. Liz Avery

      Even my siblings (56 year T1D) think I fake it when I experience a low and need to eat. That is the jealous mindset of “Liz always gets her way”. Grow up.

      1
      4 years ago Log in to Reply
    11. AnitaS

      I have T-1, but even my type 2 diabetic relatives are unaware of some of the differences between types 1 & 2. And some of the relatives who understand diabetes fairly well still don’t realize I can go for hours without eating because the pump helps, but they still think I have to be on a strict eating schedule. Like some other person noted, I don’t know all about others’ diseases, so why do I expect them to know all about my disease? Heck, just the other day when my cgm beeped, my mom offered me a hard boiled egg. My father would have known I needed something like juice.

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

      Some think they know about my diabetes, but the knowledge makes them uncomfortable, so they avoid me. They don’t visit and rarely call me. I can forgive them. The doctors on whom I must rely I am less forgiving. I should not have to keep correcting their changing my diagnosis back to T2, nor should I endure their pompous explanation of the two types (T1 is little kids, etc.) I shouldn’t have to repeatedly fight for continued access to insulin and CGM. Switching doctors would do me no good. All the doctors in this town are in lockstep and I am labeled the problem.

      1
      4 years ago Log in to Reply
      1. Karen Newe

        So sorry you are struggling with your doctors.

        1
        4 years ago Log in to Reply
    13. Molly Jones

      As I have three members of extended family in the medical field, a few of them understand it quite well. The others are ignorant as I am of many conditions myself.
      Since only half a percent of the population has this type 1 of this condition, I can understand the ignorance.

      1
      4 years ago Log in to Reply
    14. Cheryl Seibert

      I have a small extended family. One grandmother was Type 2 so she knew about diabetes. While my extended family has a lot of Type 2, they really no nothing about my T1D devices, what insulin does or anything else about my T1D.

      1
      4 years ago Log in to Reply
    15. Wanacure

      I have many distant relatives on both sides of family but we are not in touch. Years after my brother and I were diagnosed I learned it was on my mother’s side as well as my father’s side. I think this helped my father feel less guilty. I think at least some of the extended family members felt diabetes was shameful, an indication of “genetic inferiority.” My own mother had been a strong believer in eugenics…till her own sons developed diabetes.
      You would not believe how many “educated” Americans and Europeans including doctors and even Supreme Court Justice Felix Frankfurter endorsed eugenic practices like sterilizing people classified as “idiots,” “morons,” “homosexuals,” “insane,” epileptics, “criminals,” the colonized indigenous people of color, “cripples,” “half-breeds,” etc. Thousands were sterilized in the US well into the 1960’s. Ever seen the movie, “The Bad Seed?” Have you seen the PBS documentaries? Read any of the well-documented books? In “liberal” Seattle I met a “mixed-race” couple who could not buy or rent outside of the redlined zone. The world’s largest “democracy” still has a caste system based on the supposed superiority of lighter skin color. Today, look at the rise in popularity of “anti-immigrant” politicians in many “white” “so-called Christian” countries. How will YOU vote next month?

      4 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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