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    • 14 hours, 43 minutes ago
      Greg Felton likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      I fell in love with an insulin-dependent Type 2 20 years ago. There’s something terribly romantic about taking Lantus together at the end of the day.
    • 15 hours, 15 minutes ago
      ConnieT1D62 likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      One time I was explaining that a new pump would be too expensive at the time because my deductible had just started over.. and she asked if I had insurance and I said yes….. then she said “then it should be free with insurance.” 🤦‍♀️ She may know a little about the challenges of living with diabetes, but she knows nothing about how insurance works or how costly T1D supplies are.
    • 15 hours, 33 minutes ago
      Steve Rumble likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      I fell in love with an insulin-dependent Type 2 20 years ago. There’s something terribly romantic about taking Lantus together at the end of the day.
    • 16 hours, 4 minutes ago
      Lawrence S. likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      I am an RN. Been going to same doctor for about ten years. Took me six years to train him. I am very well read when it comes to my LADA. He trusts my judgement and gives me excellent parameters to make decisions. Recently had a bad case of Covid. Insulin needs changed dramatically. Getting back to normal but he made sure I had scripts to cover my ups and downs with insulin needs.
    • 16 hours, 5 minutes ago
      Lawrence S. likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Mine acknowledges the struggles and challenges that go along with managing T1D in my daily life. She gives suggestions as to what may or may not help and has often asked me I how I handle situations so she can give suggestions to other T1D patient's.
    • 16 hours, 6 minutes ago
      Lawrence S. likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      None of my endocrinologists or NPs have had T1D but I always discuss my challenges and they are incredibly helpful. What I always find astonishing is they are constantly amazed at how well I’m doing even when i don’t think I’m doing that well because most of their patients have nowhere near the A1c’s I’m able to achieve. And just hovers in the 6’s!
    • 16 hours, 31 minutes ago
      Jubin Veera likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      The hard spots are fairly frequent with the pump infusion sets. Especially if I go past 3 days which I try to avoid! I don’t think I ever got one from injections. I try heat and massaging to treat them and they normally go away after a day or so. Once I had a large area that I had to treat with antibiotics.
    • 16 hours, 33 minutes ago
      Magnus Hiis likes your comment at
      Have you experienced any symptoms of physical sexual dysfunction as a result of having diabetes, or having diabetes-related complications?
      I’m 79. My last orgasm was springtime about 3 or 4 years ago. When I complained of ED, my PCP Rxd 3 to 5 (60-100 mg) sildenafil tablets by mouth about one hour prior to sexual activity. This alone hasn’t worked to bring me up to former sexual capacity that I had 10 years years ago. I’m still considering consulting finding a doctor who’ll prescribe a safe but effective way of administering testosterone or an anabolic steroid in a dose low enough to avoid causing cardiovascular problems but high enough to restore normal ability that I had up to my sixties. My present doctors say it can’t be done, but there are doctors who advertise otherwise. Analogs of the hormone insulin can be delivered in small safe doses, why not testosterone?
    • 1 day, 8 hours ago
      Becky Hertz likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      We are all so very different, and trying to say that all of us with T1 understand what it's like for another who has the same hill to climb is unproductive. Having a health care provider with T1 may often be helpful just because there's apt to be more knowledge about the specifics. How we respond to the disease is such a personal matter, that I really don't think there are any guaranteed benefits beyond the grasp of the factual. Finding a doc with the same general attitude about the disease does feel good, and sometimes that's all I hope for after working hard to make peace with the disease for 70 years. Asking my doc to "get it" used to be almost my mantra, but I've come to realize that the ones who don't just see us as unruly childrenchildren
    • 1 day, 8 hours ago
      Becky Hertz likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Both my endocrinologist and my nurse practitioner are great. They compliment me on the way I take care of my life and health and make aure I get all the supplies I need managing all the paperwork Medicare and insurance requires. My nurse practitioner who works with me on managing the pump has her own opinion about the pump settings based on her technical knowledge which is different than what I do with my settings based on living with them. She has thru the years learned to respect what I do and is surprised with how my settings work. So we are now at peace. Both very supportive.
    • 1 day, 11 hours ago
      pru barry likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Yes. However, for those of you who assert, "It takes one to know one," the same might be said of age. Geriatrics is a marvelous array of marvels.
    • 1 day, 11 hours ago
      mojoseje likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      I said yes but that refers to my nurse practitioner who sees me every other visit, if not more often. The doctor may know how hard I try but perhaps takes my efforts for granted.
    • 1 day, 14 hours ago
      Anneyun likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      How can someone without the disease really understand what it is to live with it? I have never had a doctor with T1D in 60 years.
    • 1 day, 14 hours ago
      Bruce Schnitzler likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Yes. However, for those of you who assert, "It takes one to know one," the same might be said of age. Geriatrics is a marvelous array of marvels.
    • 1 day, 14 hours ago
      Kristine Warmecke likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My endo is young, very empathetic, thorough, always asks for my input, and does research. I am blessed too. have him, and the one before for over 25 yrs.
    • 1 day, 14 hours ago
      Kristine Warmecke likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Yes. However, for those of you who assert, "It takes one to know one," the same might be said of age. Geriatrics is a marvelous array of marvels.
    • 1 day, 14 hours ago
      lis be likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      None of my endocrinologists or NPs have had T1D but I always discuss my challenges and they are incredibly helpful. What I always find astonishing is they are constantly amazed at how well I’m doing even when i don’t think I’m doing that well because most of their patients have nowhere near the A1c’s I’m able to achieve. And just hovers in the 6’s!
    • 1 day, 15 hours ago
      Daniel Bestvater likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My provider does not have T1. Only someone with it can truly understand the various daily challenges and worth it takes to manage this.
    • 1 day, 15 hours ago
      TEH likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My provider does not have T1. Only someone with it can truly understand the various daily challenges and worth it takes to manage this.
    • 1 day, 16 hours ago
      Lawrence S. likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      I have no clue what my T1D health care provider understands about my daily challenges and I don’t know about his daily challenges either. Not sure why I should care as long as I have access to information how to best take care of myself.
    • 1 day, 16 hours ago
      Jeff Marvel likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My provider does not have T1. Only someone with it can truly understand the various daily challenges and worth it takes to manage this.
    • 1 day, 16 hours ago
      Richard Wiener likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My provider does not have T1. Only someone with it can truly understand the various daily challenges and worth it takes to manage this.
    • 2 days, 7 hours ago
      sweetcharlie likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      Hi Connie, I still have my glass syringe and show it off occasionally. We boiled the needle and syringe every morning and sharpened the needle with a file. I was diagnosed at age 6 in 1963. Life is so different now! Then, my diet was extremely limited as was my exercise. Now, I am very active and eat pretty much as I please. I maintain an A1C in the low 6s (6.2 was my last).
    • 2 days, 7 hours ago
      sweetcharlie likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      Connie and Beth, I was diagnosed in Nov 1962, age 10. During the early years I developed lumps and indentations on my upper thighs from my injections. In fact, I was able t o spot other t1 kids in my junior high school based upon the lumps in their upper arms.. (I eventually met up with them and learned that I was correct.) By the time I reached my twenties, these indentations had more or less disappeared, but I still have remnants of the lumps. I wish I could say that the layers of tissue now deposited on my legs disguises them, but they don't. I think the changes in insulin have been responsible for this improvement: the isolation and purification of animal insulins were refined, and then the various human clones were game changers in many ways.
    • 2 days, 7 hours ago
      sweetcharlie likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      Yes in my upper arms when I was a petite and skinny child in the 1960s with T1D. In those days we used glass syringes with stainless steel 1/2 inch long heavy gauge needles. My mother would jab me in the upper arms, it hurt like the dickens, and I developed several hard nodules. I was diagnosed at age 8 in December 1962 and after the initial two months of her jabbing me in the upper arms, I took over giving my own "shots" and started self injecting via site rotation in my thighs for several years. Eventually the lipohypertrophy in my upper arms resolved and I never injected there again until many years later as an adult on MDI using disposable syringes with very short and fine gauge needle tips. Periodically I would give my tired pin cushion thighs a rest and take a break for a few months or a couple of years and rotate injections in my abdomen or upper arms. Have been using a pump for over 20 years now and rarely use MDI unless I am taking a pump break for a short period of time. Happily, I no longer have lumpy sites.
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    Before you or your loved one were diagnosed with T1D, how much did you know about T1D?

    Home > LC Polls > Before you or your loved one were diagnosed with T1D, how much did you know about T1D?
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    Sarah Howard

    Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community 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. Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.

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    46 Comments

    1. LizB

      I was diagnosed at age 19. I vaguely knew what diabetes was and I knew that there was a kind that children got, and a kind that older people got. That’s about it. When I was diagnosed I don’t think the terms Type 1 and Type 2 were used. It was “insulin dependent” and “non-insulin dependent”.

      2 years ago Log in to Reply
      1. William Bennett

        I was dx’d in 1983, just turned 28, and the Dr had to register it as “diabetes mellitus, juvenile type,” after explaining that while “mature onset” tracked with age, “juvenile” didn’t, and there was this new “type 1/type 2” terminology on the horizon but it hadn’t been formalized yet. But the weird thing (as I said in my other post) is that the confusion hasn’t gone away, and even GPs misdiagnose patients because “you’re too old to have Type 1,” contradicting the whole point of the change in terminology.

        2
        2 years ago Log in to Reply
    2. PamK

      I checked both that I was aware of T1D and that I was too young. The reason? I was only 2 1/2 years old, but I had an uncle with it. So, I had heard talk about his health. Beyond that, I really did not know anything about the disease.

      2 years ago Log in to Reply
    3. William Bennett

      I was 27 when I started feeling sick all the time and the whole thirst/urination thing was getting impossible to ignore, but I had no idea what was going on or even that those things were related. Fortunately my MIL was an occupational therapist, and when my wife mentioned it to her she said “That sounds like diabetes, get him to a doctor NOW!” If that hadn’t happened, I wouldn’t have known until DKA. The doc said “Probably your wife wouldn’t have been able to wake you tomorrow morning.” Which I guess says ignorance isn’t a good thing, but who really pays attention to the details of this stuff until it hits home? I try to explain it when people ask me, but even that can be an uphill struggle. There’s a lot about it that’s counter-intuitive to the lay public. Even a lot of GPs for that matter. Lot of people get mis-dx’d because “you’re too old to have Type 1,” even though the whole POINT of “type 1” “type 2” designation was to do away with that erroneous age association.

      2
      2 years ago Log in to Reply
    4. Anthony Harder

      I was diagnosed with T1D when I was 7 years old, 1965. T1D was not exactly a topic for dinner table talk or part of my first grade curriculum.

      2 years ago Log in to Reply
    5. gary rind

      Knew about it but I was terribly needle phobic, thought I could NEVER give myself an injection or prick my fingers to draw blood for a meter! 18 years later, it’s not a big deal. 🙂

      2 years ago Log in to Reply
    6. GLORIA MILLER

      I was seven when I was diagnosed. I had never heard of it and never knew anyone with diabetes until I was a senior in high school. I can remember returning to school after being diagnosed and a girl came up asking if I was going to die. I said no, why? She said, “Well, you have die-betes! ” I went home and asked my mother if I was going to die and she said no but I recall nothing more on the conversation.

      2 years ago Log in to Reply
      1. AnitaS

        That is so sad. She wasn’t trying to be mean, she was just uneducated. 🙁

        2 years ago Log in to Reply
    7. Richard Descoteaux Jr

      I was diagnose with type 2 but we do know there is type 1 ,1.5 and know there coming out out with type 3c

      2 years ago Log in to Reply
    8. Louise Robinson

      My father was diagnosed with diabetes when I was 4 years old. This was in the 1950’s. I watched him test his urine for glucose and give himself a shot of U40 Protomine Zinc beef-pork insulin each morning. Dad passed away from cardiac complications of diabetes in 1974 and I was diagnosed several years later while in my late 20’s. I think watching my Dad deal with his diabetes helped me to better accept and deal with my Type 1 diagnosis. We have so much more available to us now to help us better manage our condition.

      1
      2 years ago Log in to Reply
    9. Kevin McCue

      I was 21 and no health issues that would have sparked my interest. Only thing I knew about diabetes at the time was learned in school during health and science classes

      2 years ago Log in to Reply
    10. Mary Dexter

      What still stuns me is how little health care professionals know about diabetes and how stubbornly they cling to misinformation.

      5
      2 years ago Log in to Reply
      1. Brett Jorgensen

        Yea.

        2 years ago Log in to Reply
    11. AnitaS

      I was diagnosed at 9yrs. I didn’t know anything about the disease but I did have a 20-year-old cousin who had it. I knew she gave herself shots for some reason but I don’t think I had ever asked her why she did that. After being diagnosed myself is when I learned why she gave herself shots.

      2 years ago Log in to Reply
    12. Sadie Robinson

      I was a home health nurse when I was diagnosed with diabetes

      2 years ago Log in to Reply
    13. cynthia jaworski

      I had never heard of diabetes when I was diagnosed at age 10. Had I known about it, I might not have been so certain that I was about to die before my diagnosis. I could not imagine that what my body was doing could be compatible with life for much longer. Learning that something could be done was an amazing revelation. I imagined that medicine had the condition well – in – hand, since there were shots for it, another example of my ignorance. This was in `962.

      2 years ago Log in to Reply
    14. Amanda Barras

      I was barely 4. No clue!

      1
      2 years ago Log in to Reply
    15. Natalie Daley

      My brother was a T1D at 23 and he was4.5 years older than me. T1D was my 40th birthday present, 35 years ago. He died at 67 from major complications. He was my role model. From the time he and then I were diagnosed, he was the only one who ever really understood what our lives were really like. He died almost twelve years ago, and I will always miss him.

      1
      2 years ago Log in to Reply
    16. George Lovelace

      Dxed age 15 in 1964, Dad had been LADA since 1940. All good knowledge came from my Mother, Dad was not good at controlling his DM but did survive until he as 79. I’m 73 now and just hoping to keep going another 20 years!

      1
      2 years ago Log in to Reply
    17. Mark Schweim

      I had a first cousin who was diagnosed with Type 1 when he was in Grade School, not sure if he was in his teens or younger when diagnosed. Back then, our family was close enough that we went to each other’s homes several times every year so I had watched him give himself Insulin shots.

      Mine wasn’t diagnosed until I was 24 years young, and at the time, my first three days in the Hospital and most of the week before diagnosis, I was actually adding to my bedtime prayers asking to not wake up in the morning and simply wake up dead.

      The night my Diabetes was diagnosed, the entire staff at the Hospital was repeatedly commenting that they were completely dumbfounded by my ability to even remain alive muchless fully alert and conscious. They all said my blood glucose was too high for their equipment able to read glucose levels up to 1600 to register a reading so I should have arrived unconscious by Ambulance due to my blood glucose alone.
      But they said everything they had said that a Blood Acetone level of 2.5% was documented as “100% FATAL with NO CHANCE of survival or recovery.” Yet when tested, my Blood Acetone level was nearly 3% and I remained conscious and alert while the Hospital staff was saying that my Blood Acetone level alone should have had me getting checked into the MORGUE instead of the Hospital ER!!!

      2 years ago Log in to Reply
    18. M Fedor

      At the time I was diagnosed, I was actually teaching biochemistry to 1st-year med students and I had just given a lecture on the molecular basis of diabetes. However, I had no clinical understanding of the disease and it took a diabetic colleague to diagnose me after I complained about poor vision and constant hunger. Luckily, he got me into the med school’s endo clinic the same day.

      2 years ago Log in to Reply
    19. Marcia Pulleyblank

      I knew very little about diabetes but had one first cousin who had it. I had no idea about type 2 . A few years later probably at least 10 years, I heard about elder relatives who who got it when they were old. I was treated initially as though I had type 2 with medication. I am sure I was going through the “honeymoon” because I was finally put on insulin about a year later.

      2 years ago Log in to Reply
    20. Janis Senungetuk

      I was 8 years old when dx in 1955. Even though my family tree lists many relatives who died from “sugar sickness” before insulin was available, personal health matters were not a topic of discussion. My maternal grandfather was dx. with diabetes as an adult. I know he used insulin, because I overheard comments during a holiday family dinner about the beef/pork source of the insulin, but it was a brief mention. During the whole month I was hospitalized with the dx. of T1D, no one provided any information to me. I was continually asked for urine samples. When I asked why, I didn’t receive an answer. The MD’s only spoke with my parents. Since I was in a ward filled with many very sick kids, some in iron lungs, I thought I was going to die. That month in the hospital, filled with unanswered questions, paved the way for a rocky start on my journey with T1D.

      2 years ago Log in to Reply
    21. Bob Durstenfeld

      I was 18 months old when Dx’d, my eldest son was 8 months old, his daughter was18 months old.

      2 years ago Log in to Reply
    22. Thomas Cline

      I had read the wonderful book about the discovery of insulin (and one of the best descriptions of scientific research complexities I have ever read) “Glory Enough for All” but I was so clueless that when I had all the classical symptoms of Type I, it never once occurred to me that I might have diabetes. In fact it was severe leg cramps (due to dehydration) that got me to the doctor, not all the other (now) obvious symptoms. Then because I was an adult, of course my primary care doctor diagnosed it as Type 2.

      2 years ago Log in to Reply
    23. Joan Fray

      My dad was a pediatrician and also T1d. I got it when I was 12. I knew you had to give yourself a shot every morning and not eat sweets ( we didn’t). But we never talked about it. Even after I got it. We just dealt with it.

      2 years ago Log in to Reply
    24. Joan Fray

      Fun reading about all of us old timers who weathered the bad old days of diabetes. Glad to have all the modern conveniences, but it’s still a pain in the old derrière! And expensive!

      2
      2 years ago Log in to Reply
    25. Christina Trudo

      Like so many others I was young (11) in the earlier days (1962) and I had never heard of it.

      2 years ago Log in to Reply
    26. Lawrence Stearns

      I was diagnosed a “Juvenile” diabetic in 1977, when I was 23 years old. I had no idea what diabetes was, not a clue. I’d heard of the word “diabetes.” But, knew nothing more than the word. It probably was a good thing, because I just followed the doctor’s directions, and eased myself into it. Back then it was multiple injections, and urine test strips, which were completely useless because they told me where me glucose levels may have been hours before. My first signs of diabetes were, complete exhaustion walking up a flight of steps, and constant thirst. I was drinking water by the gallon. Felt exhausted all the time. Figure that I was diagnosed within several days to a week after onset.

      2 years ago Log in to Reply
    27. Kristine Warmecke

      For my brother, dx. at 7 month’s old in 1972, my parent’s knew little about it; when I was dx. at 11 years old – 10 years later, we well versed in T1D.

      2 years ago Log in to Reply
    28. connie ker

      My husband was a juvenile T1D when we married, so I knew enough after watching him seizure, sweat, waiting to eat, timing meals, mixing insulins and the constant horrors of this disease. When I was diagnosed with LADA 16 years into our marriage, I knew enough to be scared, afraid and vigilant to be copliant with dietary changes in the kitchen. 20 years into our marriage, our youngest son was diagnosed with T1D in the 7th grade and he hid in his locked bedroom for an entire weekend unable to accept his fate. He knew way too much for a 13 year old. 20 years later, he is married and a CPA in Chicago on a mini-med pump and I am a widow living alone with T1D saved by the Abbott Freestyle Libre.

      2 years ago Log in to Reply
    29. Chris Albright

      I had a family member that had T1 diabetes, so I knew there was a difference between T1 and T2, but did not know any real details of either (was a child…)

      2 years ago Log in to Reply
    30. lis be

      diagnosed at age 8. all I knew then was how to swim, play soccer and draw comic strips. next thing I remember I was peeing in a cup and droppering urine over clinitest tablets in a tube.

      2 years ago Log in to Reply
    31. Becky Hertz

      I live in a small town. There were two other girls around my age that had diabetes so I knew some information about it before I was diagnosed.

      2 years ago Log in to Reply
    32. kilupx

      Because my brother got juvenile diabetes when he was 10 and I was 9, the whole household learned about diabetes togethe. We all ate my brother’s diet until I grew up and moved away. So when I was diagnosed with Type 1 in my 60s, I thought I knew a lot. And I did compared to most people. But my brother had been dead for some time and I was stunned at the improvements in technology and pharmacology. I remember jars in the bathroom for urine testing and syringes and needles boiling on the stove. I’m so sorry that my brother wasn’t able to take advantage of an insulin pump and CGM.

      2
      2 years ago Log in to Reply
    33. kristina blake

      1975, Dx’d with D. Since I was 30 years old, it was T2D. I had heard of D, but it was still called juvenile onset or adult onset. Since I was an adult, I figured the initial Dx was correct. But I had the classic syntoms of rapid onset T1 (but didn’t know anyone with D to ask, it was pre-internet, and there was o one in my family with any type of D – lots of HCP’s in the family back several generations). Anyway, I was a ballet dancer, slim, fit and got down to 95 bls (I’m 5’6″) and then into DKA coma. That’s how I got the correct Dx. I am very grateful that there are reputable orgs and support groups on the internet so others don’t have to go through what I did – there are places to ask questions. I didn’t know enough to challenge the T2D Dx.

      2 years ago Log in to Reply
      1. Steven Gill

        Like you I was also originally diagnosed TYPE 2 (logical though: I ate everything, drank everything, obese…) but after losing 100 lbs the levels went crazy again. Fortunately for me I was initially terrified and lived at the local library reading everything I could, especially on insulin and the metabolic system. Three years later had to argue with a doc for insulin but he kept saying I was too old to be a TYPE 1 (as if age matters, or even if such a diagnosed was needed to progress to insulin) and kept prescribing meds.

        After finding medical trials the diagnosis was changed to TYPE 1, and the rest its history. By that time I was pretty educated about diabetes and the endocrine system so it was actually an easy adjustment for me. I feel lucky.

        Especially after reading the history here: about no education, no meters, boiling syringes. In my worse day I want to remember their experiences.

        2 years ago Log in to Reply
    34. Molly Jones

      I chose other as I don’t remember what I knew.
      I was thirty but seizure activity was high and affected my memory. I remember purchasing the ADA diabetes book immediately after dx, but not what I knew previously.

      2 years ago Log in to Reply
    35. William Schaffer

      Maternal grandmother developed Type 1 in her mid 60’s [!!] and she told of losing siblings to Type 1 in the pre-insulin era. And her identical twin sister developed Type 1 within the next year [!!!]. Grandmother lived with family off and on for the next 25 years, so I was exposed to it.

      2 years ago Log in to Reply
    36. JuJuB

      I was 3, both unaware and too young. Don’t think my mom knew much though. Heck, it was 1970. Nobody knew much!

      2 years ago Log in to Reply
    37. Rose Lentzke

      I was 4 years old when diagnosed!

      2 years ago Log in to Reply
    38. ConnieT1D62

      I was 7 years old and had never heard of diabetes. And my parents knew nothing about it either. In those days it was called “juvenile diabetes”.

      2 years ago Log in to Reply
    39. Britni

      I was much too young to have known anything about diabetes, but my mother knew enough about it to recognize the symptoms and get me to a doctor before I went into DKA.

      2 years ago Log in to Reply
    40. M C

      As I was a kid when diagnosed, I knew very little about the nitty-gritty of daily living with T1D, but knew of diabetes, both Type 1 and Type 2. I was the first, and to date, only member of our extended family with T1D.

      2 years ago Log in to Reply
    41. persevereT1D52

      dx’d at 17 but my best friend since 11 was T1 and her mother was T2 so I lived it with her but did not know any facts at all.

      2 years ago Log in to Reply
    42. Wanacure

      I had an older first cousin with Type 1. All I knew was that she had to take a shit daily. I’m not sure how old she was when it developed, but I think it was after age 12. It was never discussed with me. But my mother knew heredity was a factor, so she immediately took me to a doctor when she saw how tired I was, and that I was getting up at night to urinate. She and my aunt had probably talked about my cousin. My brother was three years younger than I. He also developed it at age 15. When diagnosed I read the leaflets the doctor gave me, and followed an “exchange diet.” I subscribed to the glossy ADA magazine, Forecast. Like me, my brother at first was in denial. When my cousin got married she wanted to have a baby, which irritated her doctor. “It will blow her blood sugars to hell.” She may have had a miscarriage, so she and her husband adopted a child. I think her life was shortened by 10 or 20 years.

      2 years ago Log in to Reply

    Before you or your loved one were diagnosed with T1D, how much did you know about T1D? Cancel reply

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