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    • 3 hours, 43 minutes ago
      atr likes your comment at
      Do you have a management plan if you test positive for ketones? Please share more in the comments.
      When I test positive, I increase my insulin dosage to a “sick day” level, which can be anywhere from 125% dosage to 400%. I usually start with small increases in dosage, and work my way up until my blood glucose levels even out. Also, increase my water intake. I would not call my Endo unless I was unable to get my blood glucose down over a lengthy period of time. That has never been the case.
    • 3 hours, 46 minutes ago
      atr likes your comment at
      Do you have a management plan if you test positive for ketones? Please share more in the comments.
      If I had ketones thrn I am sick. If mid to large I wd call my endo or if also vomiting or dehydrated from diarrhea. I wd go to the ER
    • 5 hours ago
      Marty likes your comment at
      Do you have a management plan if you test positive for ketones? Please share more in the comments.
      If I were not feeling too bad, I would change my site, increase my insulin, drink more water and monitor closely
    • 5 hours ago
      Marty likes your comment at
      Do you have a management plan if you test positive for ketones? Please share more in the comments.
      When I test positive, I increase my insulin dosage to a “sick day” level, which can be anywhere from 125% dosage to 400%. I usually start with small increases in dosage, and work my way up until my blood glucose levels even out. Also, increase my water intake. I would not call my Endo unless I was unable to get my blood glucose down over a lengthy period of time. That has never been the case.
    • 5 hours, 8 minutes ago
      KSannie likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      None of the specialists I’ve seen have suggested, recommended or prescribed methods for doing this in the lovely 40 years I’ve been T1D. My 80th birthday is the summer. It will officially be half of my life.
    • 5 hours, 10 minutes ago
      Patricia Dalrymple likes your comment at
      Do you have a management plan if you test positive for ketones? Please share more in the comments.
      I'd most likely call my endocrinologist and ask their advice.
    • 5 hours, 23 minutes ago
      Lawrence S. likes your comment at
      Do you have a management plan if you test positive for ketones? Please share more in the comments.
      I increase my basal and insulin ratios if I eat until I show no longer test positive. I do only test if I have been high for a longer than usual time.
    • 5 hours, 24 minutes ago
      Lawrence S. likes your comment at
      Do you have a management plan if you test positive for ketones? Please share more in the comments.
      If I were not feeling too bad, I would change my site, increase my insulin, drink more water and monitor closely
    • 5 hours, 45 minutes ago
      Judith Halterman likes your comment at
      Do you have a management plan if you test positive for ketones? Please share more in the comments.
      I'd most likely call my endocrinologist and ask their advice.
    • 5 hours, 48 minutes ago
      Derek West likes your comment at
      Do you have a management plan if you test positive for ketones? Please share more in the comments.
      If I were not feeling too bad, I would change my site, increase my insulin, drink more water and monitor closely
    • 20 hours, 58 minutes ago
      KCR likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      None of the specialists I’ve seen have suggested, recommended or prescribed methods for doing this in the lovely 40 years I’ve been T1D. My 80th birthday is the summer. It will officially be half of my life.
    • 1 day, 3 hours ago
      Marty likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      I have a blood ketone monitor. It works just like a glucometer.
    • 1 day, 5 hours ago
      Kathy Hanavan likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      Perhaps only the poets who love alliteration could love the phrase, “killer ketones.” The ungodly pain experienced is your body eating and devouring itself. 🥵 Ketones are relentless killers. Do not give the bad guys a chance.
    • 1 day, 6 hours ago
      Judith Halterman likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      Perhaps only the poets who love alliteration could love the phrase, “killer ketones.” The ungodly pain experienced is your body eating and devouring itself. 🥵 Ketones are relentless killers. Do not give the bad guys a chance.
    • 1 day, 23 hours ago
      Anthony Harder likes your comment at
      Do you have ketone testing strips?
      Hi, Marty. Does your specialist have a source for that claim? It makes little sense that ketones would rise faster than BG since the metabolic pathway is much slower. If there's a source, however, I'd look further into the claim. FWIW, I've been a Type 1 for over 50 years; I can't remember the last time I tested for ketones. I possess no ketone testing strips.
    • 3 days, 2 hours ago
      Marty likes your comment at
      Does your insurance cover injectable glucagon, nasal glucagon, or both?
      Covers it with co pay
    • 3 days, 4 hours ago
      atr likes your comment at
      Does your insurance cover injectable glucagon, nasal glucagon, or both?
      It covers both. I prefer to have the the nasal version as I think it would be easier for someone else to administer.
    • 3 days, 5 hours ago
      Lawrence S. likes your comment at
      Do you have a non-expired glucagon prescription?
      I’ve been T1D for 60 years. As a child my mother didn’t like needles or injections so she just fed me when low. In college, explained use to dorm mates and classmates would’ve been a waste of time. Now married, my wife assumed the role of my mother and doesn’t like using needles on me either. I don’t have glucagon.
    • 3 days, 5 hours ago
      Lawrence S. likes your comment at
      Do you have a non-expired glucagon prescription?
      Yes, always have one or two nasal glucagon kits (Baqsimi) at home in easy to reach locations (ie at bedside and special container in living area) and always keep one with me when I go out ( along with glucose tabs or other simple carbs for treating LBS.). I apparently required injectable glucagon several times as a child and needed injectable glucagon only twice as an adult, both more than 15 years ago . More recently I needed my husband to give me Baqsimi after eating a difficult to dose for, high fat meal. The experience was terrifying so I don’t go anywhere without it now.
    • 3 days, 5 hours ago
      Lawrence S. likes your comment at
      Do you have a non-expired glucagon prescription?
      I actually have 2 non-expired prescriptions. One for Baqsimi and one for Gvoke. I have not filled either of them because they’re $500-600 each.
    • 3 days, 5 hours ago
      Lawrence S. likes your comment at
      Does your insurance cover injectable glucagon, nasal glucagon, or both?
      My Medicare Part D essentially doesn't cover glucagon when any form is nearly $500!
    • 3 days, 20 hours ago
      Amanda Barras likes your comment at
      Do you have a non-expired glucagon prescription?
      Same here. Been as low as 19 (struggling with a vacuum cleaner bag and refused to let it win) but was still able to swallow food. I did used the “red needle” as my husband refers to it once when I went low but was scheduled for surgery and couldn’t eat or drink anything. Only once in 26 years. Fortunate.
    • 4 days, 15 hours ago
      Karen Newe likes your comment at
      Share some of your favorite T1D-related books in the comments:
      Marcus Aurelius Meditations for the benefits of stoicism. Dante’s Inferno for the nine levels of diabetic hell. Kristen Lavransdatter for the benefits of suffering. And best of all, Cervantes Don Quixote for the absurdity of tilting at so many worthless windmills of frenzied diabetic activity.
    • 5 days, 4 hours ago
      Natalie Daley likes your comment at
      Share some of your favorite T1D-related books in the comments:
      Marcus Aurelius Meditations for the benefits of stoicism. Dante’s Inferno for the nine levels of diabetic hell. Kristen Lavransdatter for the benefits of suffering. And best of all, Cervantes Don Quixote for the absurdity of tilting at so many worthless windmills of frenzied diabetic activity.
    • 5 days, 4 hours ago
      atr likes your comment at
      Share some of your favorite T1D-related books in the comments:
      Marcus Aurelius Meditations for the benefits of stoicism. Dante’s Inferno for the nine levels of diabetic hell. Kristen Lavransdatter for the benefits of suffering. And best of all, Cervantes Don Quixote for the absurdity of tilting at so many worthless windmills of frenzied diabetic activity.
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    In honor of National Siblings Day, if you have T1D, do you have any siblings with T1D? Share more about your experiences as siblings with T1D in the comments!

    Home > LC Polls > In honor of National Siblings Day, if you have T1D, do you have any siblings with T1D? Share more about your experiences as siblings with T1D in the comments!
    Previous

    If you use a CGM, on a scale of 1-5, how satisfied are you with the accuracy of your CGM?

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    How much did you spend out-of-pocket on all of your diabetes medications and supplies from the start of January through the end of March 2023?

    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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    " At T1D Exchange, we’re proud to announce our Medical and Research Advisory Team — an accomplished group of leaders in endocrinology, research, and quality improvement. Together, they are redefining what’s possible in type 1 diabetes (T1D) care through rigorous data analysis, innovative research approaches, and real-world implementation. Their collective expertise is central to our mission of improving outcomes for all people living with T1D.  “We’re excited to be working with our advisors given their deep expertise across a broad range of areas in T1D,” said Dave Walton, CEO of T1D Exchange. “Their involvement magnifies our reach, knowledge, and impact. These advisors are shaping the future of diabetes care — driving innovation across research, clinical practice, and quality improvement.”    Meet the Medical & Research Advisory Team  The T1D Exchange Medical and Research Advisory Team brings together four leading endocrinologists, each offering a unique perspective and shared commitment to advancing T1D care:    Jenise Wong, MD, PhD Pediatric endocrinologist at UCSF Benioff Children’s Hospital and Professor of Pediatrics in the Division of Endocrinology at the University of California, San Francisco Focus areas: Diabetes technology adoption and usability; health equity and access to care and technology; community-based and peer-support interventions; culturally responsive care          Jennifer Sherr, MD, PhD Pediatric endocrinologist at Yale Medicine and Professor of Pediatrics in the Division of Endocrinology at Yale School of Medicine in New Haven, Connecticut Focus areas: Clinical trials in diabetes technology (CGM and AID systems), disease-modifying treatments and immunotherapies, and emerging technologies and medications, including continuous ketone monitoring and nasal glucagon     Viral Shah, MD Adult endocrinologist at Indiana University Health and Professor of Medicine in the Division of Endocrinology and Metabolism at Indiana University School of Medicine in Indianapolis, Indiana Focus areas: Diabetes technology and adjunctive therapy trials; translational and data-driven research; T1D complications and bone health         Nestoras Mathioudakis, MD, MHS Adult endocrinologist at Johns Hopkins Medicine and Associate Professor of Medicine at Johns Hopkins University School of Medicine in Baltimore, Maryland Focus areas: AI-driven clinical support tools; EMR-based data analytics for clinical decision making; data-driven quality improvement; health equity in T1D care        This accomplished team’s expertise spans adult and pediatric endocrinology, research, and quality improvement affiliated with leading institutions nationwide. Collectively, they have authored over 500 diabetes publications and secured research funding from organizations such as the National Institutes of Health, Helmsley Charitable Trust, the American Diabetes Association, and Breakthrough T1D — while remaining actively engaged in both clinical care and research.  “These individuals represent an impressive body of work while remaining deeply involved in the day-to-day realities of diabetes care,” said Walton. Their expertise covers the full spectrum of T1D care — from AI and predictive analytics to complication prevention, automated insulin delivery, continuous glucose and ketone monitoring, GLP-1 treatments, health equity, mental health, autoantibody screening, and disease prevention.    Turning insight into impact  The team’s work goes beyond research, focusing on translating insights into real-world practice. By leveraging data to scale best practices, the goal is to drive meaningful, measurable change across clinics and communities.  “Our advisors will help to extend our impact — whether through QI strategy, research innovation, funding opportunities, or new data-driven solutions,” said Walton. “We want to take what’s working at individual centers and spread that as broadly as possible.”   He added, “As a Collaborative, we’re also focused on advanced population health strategies such as exploring predictive data models to identify risks earlier and intervene before complications even begin to happen.”    The power of the T1D Exchange Quality Improvement Collaborative  Central to this work is the T1D Exchange Quality Improvement Collaborative (T1DX-QI) — a nationwide network of clinics working together to improve care through shared data, benchmarking, and evidence-based practices.  “I’m thrilled to serve as a Medical Advisor for T1D Exchange, because I’ve seen firsthand the impact this network can have on patient care,” said Dr. Nestoras Mathioudakis. “T1D Exchange is the premier organization for quality improvement in type 1 diabetes, with unparalleled assets like a large EHR database and robust patient registry.”  He added that he is excited to apply his expertise in EHR research and big data analytics to generate real-world evidence across diagnosis, management, and outcomes.  Dr. Viral Shah echoed that perspective, reflecting on T1DX-QI's evolution: “I have been involved with T1D Exchange since its early days and have had the privilege of witnessing how it has transformed the quality of diabetes care across the United States. I’m delighted to return as a Medical Advisor.”  He emphasized the importance of accelerating impact. “I look forward to working closely with the team to accelerate the evidence generation and to help translate these insights to improve patient care.”   Dr. Jenise Wong highlighted the visible impact of T1DX-QI on the delivery of care. "I’m truly honored and grateful to be working with T1D Exchange as a Medical Advisor. T1DX-QI is a remarkable resource for centers that are using continuous process improvement to improve the quality of care for people living with diabetes.”  “Diabetes centers working with T1DX –QI have done amazing work using QI methodology to make care accessible and equitable for all people with diabetes,” she said. “It’s inspiring to be a part of a collaborative in which centers have been creative and thoughtful with initiatives to address individual and systemic challenges to care, improving clinical outcomes as well as the patient experience."  Looking ahead, Dr. Sherr highlighted the opportunity to build on the existing strong foundation. “I’m very excited to be working as a Medical Advisor for T1D Exchange,” she said. “It’s a privilege to help shape what comes next for a group that’s already doing such impactful work.”  “Sharing what’s happening in clinical practice, benchmarking across centers, and understanding outcomes is how we figure out what’s working, what’s not, and where we go next,” she said.      The future of T1D care   With this team’s vision and expertise, T1D Exchange is positioned to accelerate progress in T1D care — bridging research and real-world practice to drive meaningful, measurable impact.  Together, we look forward to advancing innovation and improving outcomes for everyone affected by type 1 diabetes.   "

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    36 Comments

    1. Wanacure

      My brother died in October last year. He was 3 years younger and developed T1D same age as me, at age 15. Some kind of respiratory failure. Covid maybe? I wonder. His girlfriend refused his intubation. why was I not contacted? This was a shock to me and explains my absence from this forum. And then I broke my ankle.

      2
      3 years ago Log in to Reply
      1. Kathy Hanavan

        I am really sorry about your brother and welcome back!

        1
        3 years ago Log in to Reply
      2. Marty

        So sorry!

        1
        3 years ago Log in to Reply
      3. Steven Gill

        Sorry

        3 years ago Log in to Reply
      4. Karen Tay

        My condolences.

        1
        3 years ago Log in to Reply
      5. Ahh Life

        We are all saddened by the death of your brother. Contending with the inscrutability of other people involved often seems unreasonable and unimaginable. Good luck.

        3 years ago Log in to Reply
    2. Kathleen Juzenas

      My brother, who is 10 years my elder. Oddly, we were both diagnosed in our mid-twenties.

      3 years ago Log in to Reply
    3. William Bennett

      I have five siblings, about 20 first cousins and scores of second cousins (children of first cousins). One of the second cousins has T1, that’s it. Also zero for grandparents, aunts & uncles. Same for T2 afaik, though my sister has been dx’d pre-d.

      There used to be a thread on the old TUDiabetes forum, “Are you the (lucky) one?” for people with zero T1s in their family. There were a lot of us! I was always told, from dx on, not to be surprised b/c it doesn’t typically run in families, though more recently it’s apparent to me that in some cases it does. Not in mine though.

      3 years ago Log in to Reply
    4. Amanda Barras

      No siblings

      3 years ago Log in to Reply
    5. Karen Mielish-Clausell

      My siblings have type 2

      3 years ago Log in to Reply
    6. Shannon Barnaby

      I have two siblings but neither have T1D.

      3 years ago Log in to Reply
    7. mojoseje

      My brother’s T1 manifested after he had emergency gallbladder surgery in his 20s. Mine emerged when I was 7, one month after my mother died. I wonder how many people’s T1 emerges after a traumatic experience. I’ve heard it’s a thing.

      My older brother has T2.

      Also, when I was in high school, my biology teacher asked me how many siblings I had and how many of them were diabetic. (This was in the late 70s.) She told me she had three sibling and they were all diabetic but she was spared. She was surprised there weren’t more of us. At the time, I was the only one but because she told me it runs in families, I was aware that some of my siblings would become diabetic.

      1
      3 years ago Log in to Reply
    8. Kate Kuhn

      T1D is clearly in my family- Father, Aunt, Uncle, Cousin, Sister, and Son. Interestingly, neither of my grand parents.

      3 years ago Log in to Reply
    9. Bob Durstenfeld

      I have tow out of three younger siblings with T1D. My eldest of three sons has T1D and his eldest daughter has T1D. It sort of runs in our family.

      3 years ago Log in to Reply
    10. TS

      I have one brother but he doesn’t have diabetes.

      3 years ago Log in to Reply
    11. Lynn Smith

      I had an older sister who was diabetic, but I never knew if she was a T1D LADA or an extremely insulin resistant Type 2. I was diagnosed T1D at the age of 12. She was already married and living in another city by then (at the age of 16). Years later she developed Graves disease and years after that I found out she had been diagnosed as a diabetic. She never did what the doctors told her. She ate as she pleased, didn’t always take her insulin on time or at all, and so her health got worse and worse. By the time I knew much about her health, she was taking probably 3 times the amount of insulin as I was. I could go on. Long story short, she died in 2020 at the young age of 69. Between heart bypass surgery, multiple strokes, and gastroparesis, I’m not sure what her cause of death was. My uninformed diagnosis was too many years of smoking and uncontrolled diabetes cascaded her health downward into a condition she couldn’t survive. Sad story.

      3 years ago Log in to Reply
    12. Steven Gill

      I’ve a brother diagnosed T1d a few months before our older sister died of breast cancer, I was “erroneously” diagnosed TYPE2 a week after her passing (May will be 25 years). Three years later our younger sister died of leukemia, a few weeks later at those medical trials my diagnosis was changed to T1d. Through my brother’s life with alcohol and all that goes with it we lost touch but with his sobriety we remaining brothers and he are probably closer than Iegally allowed (sarcasm). My brother and myself mostly make fun of our diabetes, even the roughest times but off and on support each other. Ironically a cousin adopted into the family was diagnosed only 15 years ago and we found ways to bond: her care is abhorrent but tough for her to change her lifestyle and habits (neuropathy, gastroparesis, COPD…). No idea of other family.

      3 years ago Log in to Reply
    13. Yaffa Steubinger

      No siblings with T1, just two grandkids 🙁

      3 years ago Log in to Reply
    14. Mary Halverson

      None of my 5 siblings have it, all older than I in their 70’s, and no other family. I was diagnosed at age 61 8 years ago.

      3 years ago Log in to Reply
    15. anj1832

      I am the only one in my family with T1D. Both my older brother (34) and little brother (28) do not have it. I was diagnosed when I was 3 and I remain the only one with it. Some days it would be nice to have someone/ family member to talk to about it but then again, I wouldn’t wish this disease on my worst enemy.

      2
      3 years ago Log in to Reply
    16. kilupx

      My parents had 2 children. My brother got type 1 at age 10. I was 9 at the time. Fast forward 57 years: My brother had died a few years before and I was diagnosed with LADA at age 66. There is no other blood relative with type 1 or type 2. How I wish my brother was here to coach me. I don’t know anyone with type 1, which is why I read this site so religiously.

      1
      3 years ago Log in to Reply
    17. Karen Tay

      Yes, my younger brother, by 2 years, was diagnosed at the age of 6.
      He passed away at the age of 43 due to other reasons but his T1D definitely put a hardship on him.

      3 years ago Log in to Reply
      1. Ita Shapiro

        I’m so sorry that you lost him.

        3 years ago Log in to Reply
    18. Kristine Warmecke

      I have 2 younger brothers, one 2 years younger and the other 8 years younger than me. The one 2 years younger than me was diagnosed at 7 months old, I was diagnosed at 11 years old. We still are the first one we ask about T1D things, especially have you ever….
      We used to come up with some pretty good pranks to play on our endo. team. 😂

      3 years ago Log in to Reply
    19. Ita Shapiro

      My beloved brother passed away from an acute t1d complication

      3 years ago Log in to Reply
    20. Kristine Brown

      Mom with TD1
      Son with TD1
      Daughter with TD1

      3 years ago Log in to Reply
    21. Melinda Lipe

      No living relatives with T1D. I had to go to a children’s camp to meet other kids like me.

      3 years ago Log in to Reply
    22. Donna Condi

      My younger brother was diagnosed with Type 2 diabetes and put on pills. After several years he was put on Lantus nightly. After a few more years he was put on Humalog injections before meals. He has never been told he is Type 1.

      3 years ago Log in to Reply
    23. Cristina Jorge Schwarz

      I have T1D. I have a sibling who does not have T1D.

      3 years ago Log in to Reply
    24. mbulzomi@optonline.net

      I’m the only one with T1D in my entire family.

      3 years ago Log in to Reply
    25. Jen Farley

      I do have 1 sibling a younger brother with type 2. I also have a sister with pancreatic cancer and she maintains with diet like type 2.

      3 years ago Log in to Reply
    26. sweetcharlie

      I like all the NO’s!!!

      3 years ago Log in to Reply
    27. RegMunro

      I do have a T1D daughter

      3 years ago Log in to Reply
    28. Missy Kirchem

      No type 1 but my sister has 3 different autoimmune diseases and my brother has 1 different one also.

      3 years ago Log in to Reply
    29. Maurine Bowser

      My sister with T1D and a nephew with T1D and a niece with celiac.

      3 years ago Log in to Reply
    30. T1D4LongTime

      I have no siblings

      3 years ago Log in to Reply

    In honor of National Siblings Day, if you have T1D, do you have any siblings with T1D? Share more about your experiences as siblings with T1D in the comments! Cancel reply

    You must be logged in to post a comment.




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