46 Comments
Before you or your loved one were diagnosed with T1D, how much did you know about T1D?
You must be logged in to post a comment.
© 2023 T1D Exchange. All Rights Reserved.
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”.
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.
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.
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.
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.
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. 🙂
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.
That is so sad. She wasn’t trying to be mean, she was just uneducated. 🙁
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
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.
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
What still stuns me is how little health care professionals know about diabetes and how stubbornly they cling to misinformation.
Yea.
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.
I was a home health nurse when I was diagnosed with diabetes
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.
I was barely 4. No clue!
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.
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!
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!!!
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.
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.
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.
I was 18 months old when Dx’d, my eldest son was 8 months old, his daughter was18 months old.
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.
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.
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!
Like so many others I was young (11) in the earlier days (1962) and I had never heard of it.
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.
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.
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.
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…)
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.
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.
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.
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.
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.
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.
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.
I was 3, both unaware and too young. Don’t think my mom knew much though. Heck, it was 1970. Nobody knew much!
I was 4 years old when diagnosed!
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”.
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.
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.
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.
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.