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    • 14 hours, 38 minutes ago
      KarenM6 likes your comment at
      Have you ever been told you couldn’t physically do something because you live with diabetes?
      Long time ago - told there were certain occupations I would not be allowed to do because if T1D. Pilot, air traffic controller, military, etc.
    • 14 hours, 40 minutes ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I have been told many times "YOU CAN'T EAT THAT!" ONLY to frustrate them and eat it anyway and then bolus accordingly.
    • 14 hours, 41 minutes ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I think it is a common experience for most people with T1D. People do not understand anything about it. I do not take it personally. I try to educate when appropriate.
    • 14 hours, 42 minutes ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      Lol hell when haven't they. Lol
    • 14 hours, 50 minutes ago
      KarenM6 likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 16 hours, 42 minutes ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was only 2 when Diagnosed 70 years ago. My small town doctor admitted he didn't know much about T1D, and fortune for my parents and I he called what is now Joslin Clinic, and they told him how much insulin to give me. He taught my parents, who then traveled over 350 miles to Boston, to learn about how to manage T1D. My doctor learned more about T1D, and was able to help 2 other young men, that were later DX with T1D in our small town. I went to Joslin until I turned 18 and returned to become a Joslin Medalist and participated in the research study, 20 years ago. Still go there for some care.
    • 16 hours, 43 minutes ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was 7 when things changed in my home. My older brother was hospitalized for 2 weeks. When he came home, we no longer ate the way we had before. This was 1956. Dessert alternated between sugarless pudding or sugarless Jello. I learned that bread and potatoes had carbohydrates and that turned to sugar. There was a jar in the bathroom. It seemed my brother was testing his urine every time he went in there. There was a burner and pot on the stove designated for boiling syringes. I watched my brother give himself shots and I remember how hard it was to find someone to manage his care if my parents had to travel. Diabetic Forecast magazine came in the mail each month and there were meetings of the local diabetes association that my mother attended religiously. My brother got a kidney and pancreas transplant at age 60 and before he died lived for 5 years as a non-diabetic. A few years later I was diagnosed. Sorry he was not able to make use of today’s technology. I often wonder what he and my late parents would think about me, at age 66, being the only one in the family with type 1.
    • 16 hours, 45 minutes ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 20 hours, 45 minutes ago
      kilupx likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      My brother was type 1 since an early age. I was only diagnosed in my late 40s
    • 22 hours, 48 minutes ago
      Phyllis Biederman likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Absolutely nothing. Diagnosed in late December 1962 at at the age of 8 years and was told I was going for a stay in hospital because I have "sugar diabetes".
    • 23 hours, 33 minutes ago
      Bill Williams likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 23 hours, 57 minutes ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was diagnosed in 1976 at the age of 18 while in college. One weekend, I was drinking a lot of water and peeing frequently. I remembered having read a Reader's Digest article on diabetes, and I told my friends I thought I might have it. Two days later, the diagnosis was confirmed.
    • 23 hours, 58 minutes ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Absolutely nothing. Diagnosed in late December 1962 at at the age of 8 years and was told I was going for a stay in hospital because I have "sugar diabetes".
    • 23 hours, 58 minutes ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I knew I couldn’t or shouldn’t have my two fav things in the world: Pepsi cola and chocolate. I was 42, and suspected very strongly that I had it, and ate a large piece of chocolate cake before my doctor’s appointment (sounds more like I was 12). Fast forward 25 years later: I never had a real cola again, but do occasionally have chocolate. I’m way healthier than I was back then in terms of diet. I no longer have irritable bowel, and I’m lucky to be able to afford what I need to combat the ill effects of this chronic disease. I’m blessed, and grateful for insulin.
    • 23 hours, 59 minutes ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      It was 35 years ago for me. I had no experience with T1d. I was starting to show symptoms and my sister-in-law quickly researched T1d and told me what she found. I went to my GP a week or two later. My BG was over 600. He sent me to the hospital right away. Blood test confirmed it.
    • 23 hours, 59 minutes ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I only knew a little . That is why I give grace to others who do not know anything or have misconceptions.
    • 1 day ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day ago
      KCR likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I knew I couldn’t or shouldn’t have my two fav things in the world: Pepsi cola and chocolate. I was 42, and suspected very strongly that I had it, and ate a large piece of chocolate cake before my doctor’s appointment (sounds more like I was 12). Fast forward 25 years later: I never had a real cola again, but do occasionally have chocolate. I’m way healthier than I was back then in terms of diet. I no longer have irritable bowel, and I’m lucky to be able to afford what I need to combat the ill effects of this chronic disease. I’m blessed, and grateful for insulin.
    • 1 day ago
      Gary R. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day ago
      ConnieT1D62 likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day ago
      eherban1 likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 12 hours ago
      NANCY NECIA likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I think it is a common experience for most people with T1D. People do not understand anything about it. I do not take it personally. I try to educate when appropriate.
    • 1 day, 15 hours ago
      Anita Stokar likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I won't use the word "diabetic" as a noun. It's as simple as that, an adjective, yes. I didn't refer to a good friend with MS as a "sclerotic". When I was working with first responders, I tried to remember to say "schizophrenia is involved", or "there's alcoholism at play here".
    • 1 day, 15 hours ago
      Anita Stokar likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I think it is a common experience for most people with T1D. People do not understand anything about it. I do not take it personally. I try to educate when appropriate.
    • 1 day, 15 hours ago
      Anita Stokar likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      No one has said (in seriousness) you can't eat that, but I have gotten the question "Can you eat that?"
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    If you were diagnosed with T1D as a child or have a child with T1D, were you first misdiagnosed at the initial doctor visit? If yes, with what were you misdiagnosed? Select all that apply.

    Home > LC Polls > If you were diagnosed with T1D as a child or have a child with T1D, were you first misdiagnosed at the initial doctor visit? If yes, with what were you misdiagnosed? Select all that apply.
    Previous

    If you were misdiagnosed with something else before being diagnosed with T1D, did you end up in DKA due to the misdiagnosis?

    Next

    If you were diagnosed with T1D as an adult, were you first misdiagnosed before you got the correct diagnosis? If yes, with what were you misdiagnosed? Select all that apply to you.

    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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    22 Comments

    1. Kimberly Green

      my mom actually diagnosed me and asked to be tested specifically for it. They looked at her like she was insane, but did the ketone test, and BG and I was large and in the 400 range. not in DKA at the time of diagnosis yet though.

      5 years ago Log in to Reply
    2. Alanna_W

      As an 11 year old girl, I spent a few months going to the doctor with signs and symptoms and we were always told it was just hormonal changes/puberty. Nope. T1D.

      5 years ago Log in to Reply
      1. Kristine Warmecke

        I was 11, too, and my Mom was pushing for it to hormonal changes. Everyone looked at her like she was crazy, my brother had been diagnosed 10 years earlier.

        5 years ago Log in to Reply
    3. Richard Vaughn

      My parents took me to three doctors in 1945. Those doctors did not make a diagnosis. I was given a tonic to increase my appetite. I had stopped eating.
      A fourth doctor had my blood sugar tested and I was finally correctly diagnosed, a few days after my 6’th birthday in September, 1945.

      4
      5 years ago Log in to Reply
    4. Kristen Schell

      I was diagnosed in 1987 and had lost a lot of weight as a child and was very thirsty. My mom set an appt and we got lucky and the pediatric type 1 expert was the doctor I met with and he immediately knew what was wrong and I was shortly on my way to Children’s Hospital for a week.

      5 years ago Log in to Reply
    5. cynthia jaworski

      The first diagnosis was that my mother, who had reported my symptoms, was neurotic and needed counseling. One urine test later (insisted upon by mom) and a subsequent blood test confirmed the correct diagnosis.

      1
      5 years ago Log in to Reply
      1. KarenM6

        Hi Cynthia – that happened to my Mom, too! My poor Mom ended up having to yell at the third doctor because they all just thought I was a liar and she was worrying too much.

        5 years ago Log in to Reply
    6. Jana Foley

      Both of my youngest two children were correctly diagnosed at the ages 6 and 11, just 3 months and 4 days from one another. We had a phenomenal pediatrician.

      5 years ago Log in to Reply
    7. Rose Lentzke

      My grandmother was concerned because I constantly asking for water. My parents took me to children’s hospital where I was diagnosed in 1956 at age 4.

      1
      5 years ago Log in to Reply
    8. Janis Senungetuk

      After a three month onslaught of chickenpox, bronchitis and measles my mother took me to the pediatrician because I accidentally wet my bed. I was 8 years old. After answering a few questions, he did a urine test in the office, then sent me to the hospital for a blood test. He told my mother he thought it might be diabetes because “it ran in the family”. This was 1955, genetic studies were a long way off, but because my doctor knew my grandfather had diabetes, his guess was correct.

      1
      5 years ago Log in to Reply
    9. Brianna Lyons

      I actually diagnosed myself when I was 10. My father was T1D and was constantly telling me and my little sister to watch out for symptoms (increased thirst, urination, etc) and encouraging us to use the ketone strips he had in the house. One summer day I was annoyed with how often I was going to the bathroom, and thought I needed to check- but couldn’t find the strips. When my parents got home from work, I asked for “the pee strips” and my mother insisted I didn’t have diabetes. I said I wanted to check anyway, and sure enough: ketones. My dad took me into the kitchen and used his blood sugar meter: BG ~300. The next morning he and I went to the hospital for my official diagnosis.

      5 years ago Log in to Reply
    10. HMW

      After showing several symptoms at age 7, my mom took me to the pediatrician who immediately sent us to the Hospital for Sick Children in Toronto. They were the first hospital in the world to administer insulin to patients and their endocrinology team specializes in type 1 diabetes.

      5 years ago Log in to Reply
    11. Marla Peaslee

      I was dx in 1967, at the age of 5. I was in DKA. We had just returned, from living in Germany, to the USA. I am a military brat. My sister and I were staying with our grandparents for two weeks and 55 miles away our parents were house hunting. My grandparents thought my lack of appetite was due to difference in foods I was used to eating in Germany. Frequent urination and thirst. Once my parents returned my mother knew immediately I was ill and took me to our pediatrician. This wonderful man told my parents I was dying and to put me in the car and follow him to the hospital. He knew I was in DKA and said we didn’t have time to call for an ambulance. He took care of me for many years to come.
      My son was dx at 21 months of age, by me and then confirmed by his MD.

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

        We lived and worked in Kaiserslautern 1976-1977, then Zweibruecken 1978-1981. The insulin co-pay at that time was $1. Ahh, the good ol’ days. ( ♥ ͜ʖ ♥ )

        5 years ago Log in to Reply
    12. Julie Akawie

      I was dx at the age of three — had been lethargic, thirsty, etc for nearly a week. One day, I had been playing in my older sister’s room, and Mom came in to tell me to put her things away because she would be home from school soon. Mom found me non-responsive and called an ambulance. My blood glucose was 1600 at the time of admission in 1970, and I was in the hospital for 8 days.

      To this day (more than 50 years later), she feels ashamed that she didn’t recognize how sick I was. I remind her that there was nothing to be done about it, even if she *had* noted it earlier.

      5 years ago Log in to Reply
    13. Sue Herflicker

      My son was diagnosed at 23 months old and was in the hospital for the stomach flu. He was sent home even after I asked them to check for diabetes, being my brother had it as a juvenile. I was told I worry too much… Hence 2 weeks later we ended up at CHOP in Philadelphia with an extremely sick child.

      5 years ago Log in to Reply
    14. Nicholas Argento

      My BG was 564 when I presented to the ER at 8 yo, having lost weight and peeing every half hour. It was not a hard call….correct diagnosis amde.

      1
      5 years ago Log in to Reply
    15. KarenM6

      At 5 and I had all the classic symptoms, frequent urination, lack of appetite, lethargic, losing weight, funny breath odor… (probably more symptoms, but you get the idea). The first 3 doctors said I wasn’t sick, that I was faking it, that I was a liar, and that it was all in my head and I was just trying to get attention.
      The 4th doctor got it right. He put me in an ambulance for the nearest hospital.

      5 years ago Log in to Reply
    16. Michelle Saunders

      It was initially thought that I had a bladder infection. After a weekend of being on antibiotics and no change, the doctor had blood work done to confirm his suspicions that I had type 1.

      5 years ago Log in to Reply
    17. Ben Galindo

      Diagnosed in 1957 at age 10, was ill for 1week. Family doc said it was stomach flu. I became unconscious, taken to LA County Hospital, admitted for 2 weeks. Spent most of time learning how to take care of myself test tube urine testing, glass syringes & SS needles (boil).

      2
      5 years ago Log in to Reply
    18. Megan W

      My Mom did medical transcription for a small family practice and was close to the doctors. She recognized my symptoms from things she heard when doing transcription and asked for me to be tested. She was correct, and I was correct too as I thought I had strep throat and I did. I was 10.

      5 years ago Log in to Reply
    19. Leona Hanson

      I was diagnosed as a pre diabetic when I was 7 the doc was right but not a t1d

      5 years ago Log in to Reply

    If you were diagnosed with T1D as a child or have a child with T1D, were you first misdiagnosed at the initial doctor visit? If yes, with what were you misdiagnosed? Select all that apply. Cancel reply

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