48 Comments
At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
You must be logged in to post a comment.
© 2023 T1D Exchange. All Rights Reserved.
My mom and my brother had both been dx many years earlier.
I wish I had! I learned a few lessons the hard way. I was 18 at diagnosis and referred directly to an adult endocrinologist. I took a diabetes education class, but was the only type 1. It was probably 5 years before I met another T1D. I’ve learned a lot from fellow T1Ds since then. I try to pay it forward and offer myself up as a a “dia-buddy” and advocate for the newly diagnosed and/or their worried parents. I also refer folks to platforms like this which have made it so much easier to connect with people who live it. We’re in this together!
I knew my elder cousin had T1D, but did not know she was injecting insulin or was on a diet. She was at least four or five years older than I and she kept to herself. Everyone acted as if T1D did not exist probably to “spare our feelings.”
We did, but we had no idea about what it meant or any of the challenges or complications associated with this disease.
I worked in group home setting and we had someone that got insulin but we had to count sodium for him
Not until I went to diabetic camp.
Ii didn’t know what t1d was, anyway, at the age of 10.
No – but many years later I met a cousin who told me my Great Aunt had T1D.
Since all of my extended family lives in Sweden there is much I do not know.
1977 – I was 23 yrs old. No, I did not know anyone with any diabetes, T1D or T2D. I did not know what diabetes was. I had heard the term “sugar diabetes”, so I figured it had something to do with sugar. But, I had no idea what I was about to get into. That may have been a good thing, because I did not get excited or depressed when my doctor told me the diagnosis.
A younger sibling developed T1 about 20 years prior to my own diagnosis. In those days he had to attend a ‘special school’ more than 10 miles away from our home as other schools didn’t have the facilities to deal with someone that had T1.
I had known one person, a teenager at a school and residential treatment center. I had no understanding of it and was mystified when he ate a chocolate bar while we were on a hike. Little did I know that a few years later, I would fully understand why he needed that chocolate bar!
I was 4-1/2 in 1950 and my parents knew no one although my mother said that after my diagnosis she remembered a distant relative who was an early Joslin patient.
I knew a woman with lifelong T1D who had died due to complications some years before my diagnosis. Very sad…
I said No, but I should have said Yes. I had a cousin who was adopted who was diagnosed at age 2.
Total no. Thought I’d had one personal experience. Around 1977, few years before my dx (1983), I’d been playing a gig when a guy in the audience had a catastrophic low and went into convulsions. Interesting thing is that he was in his twenties, had just been dx’d, and was on a kind of spree–not dealing with it very well. This was from his friends who were along with him. Years later when I was finally dx’d I thought of the episode, and I still do, as kind of a reminder of what the whole thing seems like from the outside. No one seemed to know what to do for the guy, lots of people offering advice–stick a knife between his teeth to make sure he doesn’t swallow his tongue, being one idiot thing I remember, before some intelligent person got some sugar into him. For my own part I remember having no idea, just some vague notion that this was what could happen to diabetics. Didn’t help with my own dx later on, though. I had NO idea what was causing my symptoms until my wife happened to talk to my MIL, who had medical background, and she said “get him to a doctor NOW!”
I was 8 years old. Had never heard of diabetes. My parents did know of people who had T1D, and they had not done well, not surprising in that era. My first endo told me about a professional tennis player who had T1D.
I didn’t know my maternal Grandfather but he was a T1D.
My brother was just he only one I knew. He got type 1 when we were children and the whole household ate his diet. He had died by the time I was diagnosed with LADA at age 66, so technically you could say I did not know anyone with T1D at the time of my diagnosis.
I said yes, I’d had friends with type 1 in the past (elementary and high school) but I didn’t really talk with them anymore. I was diagnosed in college, at 20.
I knew a total of three people when I was diagnosed. Fortunately for me, one of these three people was my brother and the other two were close friends. I’ve got to admit it made the transition into being a T1D that much easier.
Yes I did . My maternal grandmother, and my mother
who passed on when I was 4 years old .
At 19 had no awareness or knowledge on diabetes. I’m the only lucky one in my family to have it!
I had an older cousin with T1D. I remember that my aunt worried a lot about her not taking care of herself especially after she left home for college. My mother said “Thank goodness we don’t have diabetes in our family.” I inferred that my cousin was adopted and I believed that for decades. Turned out my mother was just referencing the fact that my cousin was on my father’s side of the family. Ironically, a different cousin on my mother’s side was diagnosed a few years after I was.
Yes aunt and mom
I had cousins with T1D
Yes, my brother who’s diagnosed at 7 months old.
Not at all, no one with any type of D. I sure wish I had. I was 30 and initially Dx’d with T2 due to age (this was when it was juvenile onset or adult onset). I had no risk factors for T2D, but then I didn’t know anyone with D and there was no D of any type in my family so I wasn’t aware of “risk factors”. If I had known someone with D (again of any type) and my Dx wasn’t pre-internet, chances are I would have asked questions and been told that perhaps I needed further testing.
I was Dx’d with T2 and sent on my way. I had one follow up appt, got scolded and “put on the needle”, NpH 15 units in the morning. Again sent on my way. Finally found in a coma from DKA by a neighbor. Fortunately my day job was with a large city fire dept. WHen the neighbor called to say I wasn’t gonna be at work that day, they figured out that 9-1-1 and to be called and dispatched from HQ. Saved my life. That’s when I got the correct Dx.
Wow, how fortunate your neighbor found you and how, just by chance, you received the emergency medical help you needed! Did you let the MD who missed the correct dx. know what happened?
I’m fairly certain my parents didn’t personally know any T1s.
Sort of an unfair question, since I was diagnosed at a young age when I knew only members immediate family, but my answer is no.
My maternal grandfather was dx as a young adult but that was before there was a distinction made between types. He used beef/pork insulin. When I was dx in 1955 my parents knew of relatives on both sides who had died before the discovery/use of insulin, but they kept that history to themselves. At 8 years old I made the diabetes connection with my grandfather when I overheard him say he was going to the pharmacy to buy some insulin. Medical issues were not talked about in my family, even among family members.
Yes, I was 18 months old, my father was the first in our family to have T1D, later two of my younger brothers developed it, as well as my eldest son and his eldest daughter.
My nephew was diagnoed just three months before I was. He was 11; I was 46.
A classmate had it. She didn’t give herself her own insulin injections – her father did it for her…. which, long before I ever was diagnosed with T1D, I found extremely odd. (This was over 47 years ago)
I was 9 years old when diagnosed and I knew that my cousin who was 10 years older than I was gave herself injections, but I never knew why. I didn’t inquire as I guess it never occured to me to ask why. When I was diagnosed, it was then that I learned why my cousin gave herself shots and I was going to have to also.
Just my younger brother. I never met anyone else while I was growing up (60’s). And I went to a high school with over 2000 kids. Interesting . There are many more now. Most grade schools have at least 1 or 2 students that are t1 d.
1974, two other girls in my small town had t1d.
I had never heard of the term “diabetes” when I was diagnosed in 1969. The first person I ever met who also had it was a friend of my husband’s, about 1992.
I said no. Actually my older brother was diagnosed in his mid-twenties (just like me). I knew him when we were younger but he had already moved out of state by the time of his diagnosis and did not share with me his experiences.
I did not ever know any other T1Ds until I attended Diabetes camp. After that, it was many more years.
Yes, my dad had T1. My diagnosi made him and my mom so sad. I tried hard to make it no big deal so they wouldn’t worry.
Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
My brother, my cousin and my sister-in-law
Yes my Dad had contracted T1D about 10 yrs before I was diagnosed at 9.
From age 6, until nearly age 18, I never knew anyone with T1D. My paternal grandmother had T2D and was on insulin. Didn’t know about camps, endocrinologists, support groups, or anything current about diabetes at age 6
I didn’t know anybody else with T1 diabetes at time of diagnosis in Dec 1962. I was 8 years old. While in hospital, my MD sent an 11 year old girl with T1D who was his patient to visit me. She did her best to offer an explanation of what “sugar diabetes” was all about. I didn’t quite understand what she was talking about. I didn’t meet others with T1D until I went to overnight camp for kids with diabetes in June 1963 – then I dozens of kids, teens, young adults, and adults living with diabetes.
I was just a kid! A 7+ year old little girl who had had a double hernia operation 6 months earlier.
Since T1D is an autoimmune disease it’s possible that I was exposed to a virus that resulted in my diagnosis. Up until that point, no family member was diabetic.
l had an uncle who was and a friend of my mother’s was also a Type 1.
Too young to know.