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Were you already connected to anyone with T1D before your/your loved one's diagnosis? If not, tell us in the comments how you first found others with T1D.
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I was originally diagnosed TYPE 2 two months after a brother was diagnosed TYPE 1 (he was the catalyst for me to get tested).. I’m proud to say he’s now a dry alcoholic (18 years) but the first five years he struggled. My control was almost always good, at times I coached him, but the alcohol had 2 problems for him (first the drinking directly affected his control, than due to his drinking his wife at that time felt the need to inject insulin, but she never tested). We offer a little more moral support to each other more even at 700 miles apart. Even now we discuss my “chaotic” levels, ONLY ideas are age (YIKES!) meaning my system has slowed or the company hired younger guys taking some physical stress off me. But my insulin use is still almost 1/3 his (I’ve increased my basal 25% which seemed to stabilize things).
My Dad was diagnosed with T1D at age 18 months, I was diagnosed with T1D at age 18 months, two of my brothers were diagnosed with T1D at age four, my oldest son was diagnosed with T1D at age 8 months and his daughter was diagnosed with T1D at age 18 months. Perhaps we have a pattern?
I have genetic MEN-1 problems, which runs in my family (7 aunts, my mom, and grandmother). My pancreas was filled with tumors; thus, I had a Whipple and became a TID at 50 years old. I have one cousin who also has multiple GI problems (since age 16 years of age) making her a T1D.
When I was (mis)diagnosed as T2D simply due to my age (I did not fit any other characteristic criteria), I began to research or seek out those like me for 5 min a day. Only 5 min. as it could easily become overwhelming. I have found tremendous support and validation through social media and online platforms! 💙🙌🏻
I was 68 when diagnosed after extreme unexplainable weight loss and excellent health otherwise. I have no direct connection to anyone with type 1 other than this site and my doctor
I was diagnosed with T1D at age 16. No family history other than, perhaps (my father speculated), an uncle a couple of generations earlier who had passed. I didn’t know meeting other people with T1D was something I should do, and I didn’t really meet another person with T1D for close to 50 years, other than my retinal ophthalmologist for several years. (He had stashes of little cans of OJ in his exam rooms.) However, I reached out indirectly and taught my husband what I could so he was prepared for both the kids and their parents when kids on teams he coached had T1D. And a couple of parents of newly diagnosed children with T1D have reached out to me for tips and insights.
My husband was one of the longest living type 1 diabetics in the country and left this world at the age of 84, 2019. I am his wife with LADA which is also type 1, and we have one son who is now a married adult. For awhile, there were 3 type 1s under the same roof, and we did Diabetes together. Now I live alone, and got the Abbott Freestyle Libre to give me confidence in doing so.
Grew up with someone with T1D, his brother was dx. years later and than I was .
There was no one until my two youngest children were also diagnosed as T1Ds. Through their schools, we learned about other children with the disease, met twice a year with them, and eventually when my daughter decided to get a DAD, we got to know even more T1Ds. It as been a real blessing to know all of them and share thoughts and ideas with them.
My dad developed T1d in his 50s like me. However he was very close to the vest about sharing info about his management. So I really didn’t know much at all about the disease until I got it.
DX in 1983 at age 28. I never met another T1 until a party in 2000. Guy was on Lantus/Novolog MDI, which I’d never heard of (I was still I was still stuck on the horrible old R/N regimen). No DOC to speak of back then, or at least I wasn’t aware of it. Might have been something on the old alt. discussion boards if I’d known to look. Anyway, it was another 3-4 yrs before I was finally able to get a referral to Joslin, where the first words out of the endo’s mouth were “You’re not doing too bad considering your regimen doesn’t make any g**d*** sense.” Getting off R/N was like being let out of 20yrs in prison. Nowadays there are SO many ways to connect with other T1s and get information way beyond what you’ll get in a 15-30 minute office visit. A whole different world.
I was diagnosed on 12/28/1966 and neither I nor my parents knew anyone with T1D at that time. Social media didn’t exist at that time so there wasn’t any way to communicate with others who had T1D unless you actually knew someone who had it.
I was diagnosed on my 16th birthday in 1957. I didn’t mean another person with diabetes until 20 years later, a teenager who worked as out babysitter.
I was diagnosed in 1995 @ 18y/o. My family didn’t know anyone with T1D and we were blissfully unaware of what this diagnosis would involve. Got a crash course in the hospital. It would have been helpful to connect with others with T1D in those early days. I learned a few lessons the hard way (severe hypos). I’ve since been involved in local JDRF community events and online forums like this, which have been a great way to connect. Some of the best advice I’ve ever received had been from my T1D peers. This disease forces us to get creative sometimes and I appreciate hearing other clever T1Ds’ tricks of the trade. I hope physician offices are better now about directing their newly diagnosed patients to such resources.
I think it was probably mentioned in the Diabetes Forecast magazine because I did not get referred by my doctor’s office.
I was diagnosed in 1960, just before I turned 10. My grandmother was a Type 1 so my parents were already familiar with it.
I was 9 years old. This was 60 years ago! The only childhood illness I’d heard of was leukemia so it was very scary. My mom eventually found JDRF but there wasn’t anything for kids at that time. It was many years before I met anyone else with type 1 but I was always grateful it wasn’t leukemia!
Yes my mom.
I was 42 and didn’t learn that my grandfather was T2 until I told my parents that I told the doctor no one else in my family had diabetes, and they were like – no, your grandfather was diagnosed T2 at age 75. Who knew?
No family or friends with t1d in 1972. I met others when my parents took me to a local diabetes support group.
My maternal grandfather was diagnosed just as insulin was becoming available. In my family medical issues weren’t talked about openly. Both sides of my family had histories of auto-immune disease. I was dx in 1955, at the age of 8. Although we were often at my grandparents for family events, diabetes was never mentioned. I had no connection with anyone else living with T1 for 60 years.Then I “discovered” the DOC while exploring social media. I took a chance, attended the first Diabetes UnConference in 2015 and met 90+ others living with diabetes. There was instant bonding and my life has been richer because of that.
I have a strong history of T1D, like many Scandinavians. T1D is highly correlated with Northern European heritage.
Meet my first other type 1 at summer camp. Unfortunately the camp was in another state, so there wasn’t a lot of opportunity to get together. Meet some also at ADA events. But I knew no one through all of my school years.
My first experience meeting another person with diabetes was when I was in first grade. Another child, my age, same school. At the time, being in first grade, I found him to be silly , weird and I didn’t like him. I only thought he was weird because he gave himself injections in his stomach!! That was it, until…… The Mary Tylor Moore show. I knew she also had type 1 diabetes, and I admired her in my youth and through the years. I felt connected through sharing being type 1 diabetics. At that time I was 12 years old. No history on either side of my family with diabetes. In fact, we had never heard the word diabetes and didn’t know what the word meant, the year was 1967 when I was dx at the age of 5.
I was diagnosed at age 4 in 1956. I would spend 1 entire day every 3 months at Children’s Hospital to be with other young people who also were learning to cope with T1D. I learned a great deal from the medical staff and other people my age. The program ended when I entered 6th grade.
I was the first confirmed Type-1er (in 1967) in my immediate family. Years later, an older cousin (by 12 years!) was diagnosed with it. As a side note, there were many members of my family who either died or went missing many years before I was even born (1956). My father’s father died from the 1918 Influenza pandemic and my mother’s older brother just dropped out of sight when she was still a teenager. Who knows what their stories would have been otherwise?
When I was diagnosed with T1D I had never heard of it before and didn’t know anyone else who had diabetes for at least 5 years. (After moving from KS to MI, I knew that my MD had other patients with T1D, but I didn’t know which of his patients were in that category.) I don’t remember meeting with someone else with T1D and talking to them about it until at least 15 years after I was diagnosed.
I contacted the American Diabetes Association who at the time sponsored many support groups in my area. I joined a group of Type 1 and Type 2 and from there developed connections to other Type 1s and groups that are Type 1 specific.
I was diagnosed at age 11 in 1961 where I lived in a small town and was treated by my pediatrician and I had never heard of diabetes and don’t know if my parents had ever heard of it either. One year later my parents took me to Portland Oregon where there was a diabetes clinic with several endocrinologist and here I met other people with both type one And type two diabetes. This program offered an ambulatory inpatient unit where the doctors encouraged all of their patients to check in for one week per year to fine-tune their diabetes. Of course this was during the era of urine testing. Here I met other children as well as adults and both people with type one and type two. I remember it as a positive experience as everyone banded together and encouraged each other and we had plenty of recreation time. As an adult I worked in the diabetes field as a registered dietitian and of course was always in contact with many people with diabetes including colleagues with type one and type two. Now that I am retired I do not know very many people with type one diabetes. I have just two friends here in town who are also on insulin pumps and then have met many people through social media.
Not long after I was diagnosed, some posted on Facebook about setting up a local group. I also met people on T1 education course.
No one in my family has had T1D although autoimmune is rampant on my mother’s side. I wasn’t diagnosed until the age of thirty. The only way I meet others with T1D is when they see my pump which I started using about six years after dx.
I had never heard of it. But my aunt who lived nearby had, and was of the “Oh dear” opinion. I think she figured I would not live very long. I did not knowingly meet another Type 1 until I met a Type 1 diabetic friend of my husband’s, maybe 15 years after I was diagnosed.
1979 – 10 years old – dr in a small town hooked my mom up with another mom who had a daughter same age. Then summer camp led me to my people. ❤️
My middle brother was dx. at age 7 months, finally, 3 or 4 years after he was dx. another young child had same symptoms & dx. her earlier (we happened to used the same GP in another town but lived in the same small community.) So our families became closer because of this. So I knew both of them before my own dx. several years later.
I was diagnosed in late December 1962 at the age of 8. I spent 3 weeks in a hospital on a pediatric unit where I, my parents, and my grandparents learned survival basics of how to live with “juvenile diabetes”. While in the hospital the kind & compassionate physician who was treating my diabetes sent one of his patients, an 11 year old girl with “sugar diabetes”, to visit me. I remember she said she was diagnosed at age 7. We talked for awhile and she told me about sleep-away summer camp on Lake Erie for kids with diabetes. I attended camp ZaNiKa in Northwest Ohio for two weeks every summer from 1963 to 1968 with dozens of other kids with diabetes aged 7 to 15. At age 16 and older campers had the option to become CITs (counselors in training), counselors, and assistant camp directors – roles which helped us develop leadership skills and to mentor other kids and peers to live well with diabetes. It was there that I experienced the joy of just being a kid along with other kids like me. We all learned from each other how to take care of ourselves by having fun, and sharing coping skills & techniques for problem solving and reducing risks that still serve me today.
Diagnosed at age 10 in 1984. Summer camp was the first place I really met others. Though growing up in a small town once diagnosed you quickly learned who else had it.
I had been very sick with a virus. When the virus was over (or so I thought), I still felt terrible. I broke down and went to the doctor, it was at this time i had my first blood sugar check. It was 290, so they started me on Metformin. Metformin worked for just a little while, maybe a couple weeks. Then my BS was shooting up like crazy. The Dr did a c peptide test and it came back my pancreas had quit working.
I was diagnosed at age 7 in 1968. I can almost say ditto to everything Connie Hanham-Cain said. I didn’t know anyone with T1D; neither did my mom. So, when told about Camp Sweeney in the Dallas-Ft Worth area, we jumped at the chance to be around other kids age 6-15 with T1D at a camp just for us.. Each session was three weeks long sleep away. I had only been diagnosed for five months so it was hardest on my mom. I loved camp!! In fact I’m still in contact, to this day, with some of the campers I met. I was a camper 8 summers,, then Jr counselor, then counselor for two summers! Wow! What a life and at 59 I can say the training and experiences I had at camp helped form my life!
I was aware of a coworker of mine who had T1D before I was diagnosed. He retired shortly after I was diagnosed. Later on I worked with a man in the UK who was T1D. It was interesting to see how he managed his T1d, with a premixed pen. Nobody close to me had it. This “forum” has been interesting to share experiences with our treatment regiment, pump and conditions. I no longer feel like I am alone with this.
Went to a couple of diabetes support groups that were primarily focused on T2 in the early years. Did not find real support until 2016 through a local T1D group.
Dx 1974 at 8 years old. The year before that, I had heard about diabetes and having to give yourself shots every day and decided that was something I never wanted to get! When my doctor told me the news I knew about the shots, but I didn’t know anyone personally. When I went to school the following year I made friends with a classmate whose mom had T1. She looked like Tennille (of Captain and Tennille), and she made me laugh. I can still see her clearly in my mind. Nobody else knew anything about it, and very few people had heard of diabetes of any kind at the time. It was very different back then.
I didn’t know anyone with T1D but did find an online support group which was very helpful
I said yes because my uncle had it, but I did not know him well and had no real connection with him.
My neighbor was at the endocrinologist’s office at the time I was first being diagnosed. We support each other and check on each other, since we are both widows.
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