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    • 1 hour, 45 minutes ago
      Ahh Life likes your comment at
      How willing would you be to take immunosuppressants if you were considering an islet cell transplant?
      After 70 years with T1d and some reduced kidney function and seeing my dad's poor recovery after a kidney transplant, I have no desire to be subjected to chemicals that would further accelerate the demise of my kidneys.
    • 17 hours, 34 minutes ago
      lis be likes your comment at
      How willing would you be to take immunosuppressants if you were considering an islet cell transplant?
      Nope, T1D is a manageable thing with today's technology. I'll keep the devil I know.
    • 18 hours, 5 minutes ago
      dako likes your comment at
      How easy is it for you to find research opportunities that feel relevant to you?
      It seems to get harder every year. They seem to be looking for younger and newly diagnosed people.
    • 18 hours, 5 minutes ago
      dako likes your comment at
      How easy is it for you to find research opportunities that feel relevant to you?
      Agreed, and there are plenty of issues aging with T1D.
    • 23 hours, 26 minutes ago
      eherban1 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.
    • 23 hours, 27 minutes ago
      eherban1 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.
    • 23 hours, 27 minutes ago
      eherban1 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, 7 hours ago
      Karen Newe likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 1 day, 9 hours ago
      KarenM6 likes your comment at
      Which of the following do you use or wear at least 25% of the time (e.g., 2+ days per week)? Select all that apply:
      None of these. I'm not interested and have not even heard of some of them. The fewer gadgets the better.
    • 1 day, 9 hours ago
      KarenM6 likes your comment at
      Which of the following do you use or wear at least 25% of the time (e.g., 2+ days per week)? Select all that apply:
      How about “None of the above”?
    • 1 day, 9 hours ago
      KarenM6 likes your comment at
      Which of the following do you use or wear at least 25% of the time (e.g., 2+ days per week)? Select all that apply:
      None of these
    • 1 day, 15 hours ago
      John Barbuto likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      I agree with Molly. I’m moderately concerned because if I were extremely or very concerned, I just wouldn’t participate. I’m concerned for others who are brave enough to risk their own health for the sake of research and helping others.
    • 1 day, 15 hours ago
      John Barbuto likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 1 day, 19 hours ago
      lis be likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Our collective lack of concern about the long term ought to put us at the top of the transplant list.
    • 1 day, 19 hours ago
      lis be likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Long term effects are not a worry to me after 50 years of T1D…..not sure that I have a long runway ahead of me. If it helps advance a better life for young people with T1D sign me up.
    • 1 day, 19 hours ago
      lis be likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 1 day, 19 hours ago
      Natalie Daley likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 1 day, 20 hours ago
      ChrisW 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?
      Well the first person in this trial has been insulin-free for over 1-1/2 years and has been feeling fine. All 12 participants in this trial so far are off of insulin. The trial is now going to include people with t-1 diabetes and some kidney damage as this immunosuppressant (tegoprubart) has shown no toxic effects to islet cells or to kidneys. I will keep watching as the trial progresses. This question only asked if we had heard about it. I didn't see the question as an advertisement.
    • 1 day, 20 hours ago
      ChrisW likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 1 day, 20 hours ago
      Brian Vodehnal likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Concern is relative to outcome. Getting a five year reprieve on the daily management of T1D might be worth it.
    • 1 day, 22 hours ago
      Bonnie kenney likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Pinioned to youth, my comment may be difficult for some of you to understand. But at my age and experience level, long-term effects consists of what is going to happen in the next thirty to forty-five minutes. Sigh! 🎀 ྀིྀི
    • 1 day, 22 hours ago
      Bonnie kenney likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Moderately as this is for others. I don't imagine being offered this myself.
    • 1 day, 22 hours ago
      Bonnie kenney likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Long term effects are not a worry to me after 50 years of T1D…..not sure that I have a long runway ahead of me. If it helps advance a better life for young people with T1D sign me up.
    • 1 day, 22 hours ago
      atr likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Our collective lack of concern about the long term ought to put us at the top of the transplant list.
    • 1 day, 22 hours ago
      atr likes your comment at
      How concerned are you about the risks of islet cell transplantation such as unknown long-term effects or immune system response?
      Long term effects are not a worry to me after 50 years of T1D…..not sure that I have a long runway ahead of me. If it helps advance a better life for young people with T1D sign me up.
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    If you’re telling someone you just met about having T1D, which phrase(s) are you most likely to say? Select all apply.

    Home > LC Polls > If you’re telling someone you just met about having T1D, which phrase(s) are you most likely to say? Select all apply.
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    It's World Autism Day! Do you or your loved one with T1D also live with Autism?

    Samantha Walsh

    Samantha Walsh has lived with type 1 diabetes for over five years since 2017. After her T1D diagnosis, she was eager to give back to the diabetes community. She is the Community and Partner Manager for T1D Exchange and helps to manage the Online Community and recruit for the T1D Exchange Registry. Prior to T1D Exchange, Samantha fundraised at Joslin Diabetes Center. She graduated from the University of Massachusetts with a Bachelors degree in sociology and early childhood education.

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    9 Comments

    1. Mark Schmitt

      I would never tell someone I just met that I have T1D. They should judge me on me, not some annoying disease that I live with. Discrimination happens, especially agains diabetics.

      2
      2 years ago Log in to Reply
    2. William Bennett

      The question puts this in a live-conversation context. In a written context or something where I’m trying to be formal about it I’d be careful to say “I live with T1” rather than saying I “am” T1. But in conversation I wouldn’t bother most of the time. T’other thing is that I DO tend to stress the type, because it’s hard to get people to understand that I’m dealing with a more acute situation than just having to restrict carbs to lose weight or whatever. Most commonly it’s someone offering hi-carb food and I want to be clear that I’d love to have some but I’d have to take a lot of insulin for it and it’s mostly simpler if I practice avoidance. Sometimes that leads to a more detailed discussion, which can be interesting, though I try to avoid boring people with the ins and outs of it unless they seem to be actually interested.

      2 years ago Log in to Reply
    3. mlettinga

      I will often add “
      Which formally was called Juvenile Diabetes as most people don’t know what type 1 means.

      1
      2 years ago Log in to Reply
    4. Trina Blake

      I usually wait until a conversation gets to a point where mentioning a medical condition is a good fit. For example, discussing the issue of access to health care etc. I never use the word “diabetic” as a noun – just like I don’t use schizophrenic as a noun (a person is dealing with schizophrenia, etc.).

      I do make the most of an opportunity to educate when I can and I take care to include info regarding T2D as well (such as “no type of D is self-inflicted, describing the auto-immune nature of T1D, and the hereditary of one’s own family tree as being the highest risk for T2D, or the idea that the insulin resistance that is the hallmark of T2D is a root cause of the weight issues).

      2 years ago Log in to Reply
    5. Sue Martin

      I “have” this disease, I am not this disease.

      3
      2 years ago Log in to Reply
    6. Molly Jones

      I have a condition or disease, it’s nice that (some of) the public is aware of the different types.
      This website does not seem to want to accept answers until almost 20hrs after the question has been posted for the past few days.

      1
      2 years ago Log in to Reply
    7. Bill Marston

      “If you’re going to get an incurable chronic disease that’s most likely going to kill you, get TYPE 1 DIABETES! **You can manage the hell out of diabetes** – not like similarly acute permanent conditions of liver, lungs, kidneys, heart … (P.S. i don’t get into organ transplants for any of these, for simplicity and IMPACT on their thinking.)

      2 years ago Log in to Reply
    8. T1D4LongTime

      Also, I might say “I have long-term Type 1 diabetes”. Saying “long-term” may change the interaction with the person. A mother with a Type 1 child may be more willing to talk to you about T1D if they know you’ve lived with it since childhood. Many people assume an older person (over 50?) has Type 2 and cannot relate to those with T1D.

      2 years ago Log in to Reply
    9. Steven Gill

      I marked “I am…” but have said “I have” as well. I hold a similar

      2 years ago Log in to Reply

    If you’re telling someone you just met about having T1D, which phrase(s) are you most likely to say? Select all apply. Cancel reply

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