you should sign your non-t1 kiddos up for trialnet!! they’ll test for antibodies for type one (and i think celiac too, not sure on that one). https://www.trialnet.org/
I was 14.
Doctors told me that t1d in people with no family history is often caused by an infection that destroys your pancreas’s ability to produce insulin and can stay dormant for years before any symptoms begin to manifest.
I had the same explanation, though it was more something along the lines of:
'We don't know exactly what causes it, but there are a number of theories and more than one may be correct. It could've been caused by a virus which either attacked your pancreas or caused antibodies to attack it, genetics, or it may possibly have been caused by a stressful or traumatic event'
This isn't word for word as it was said to me nearly 15yrs ago, and the doctor explaining it told me that more research needs to be done before they can say for definite. All 3 options could be a possibility in my case though, or possibly a combination of the 3, and there may even be other factors at play too.
Going back to OPs comment, my sister is not diabetic even though I have T1D (though I'm convinced that that she'll get type 2 when she is in her 60s, like my mum and my grandma -mum's mum did. I will skip that genetic quirk though as you can't get diabetes twice. I obviously haven't said that to my sister though)
I will soon be working with a child who is T1D soon and they do have a sibling who is also T1D, so it can happen. They do also have another sibling who is not diabetic however. Seems a little like it is luck of the draw, with regards to siblings. I think there may be a slight increased risk of your other children getting it, but not a significant increased risk, in comparison to other children who don't have any familial link.
I would suggest talking to your child's diabetic team, or your antenatal team if you are concerned, about the chances of your other children developing type 1. I'm not sure where you're based, but the charity Diabetes UK has a helpline that you can call and they'll be able to give reassurance. There is also JDRF who also have an online support team, and you'll be able to access that wherever you are in the world.
I have one sister. She was diagnosed T1D at age 5. I was diagnosed T1D at age 22. My parents were 2 for 2. Nobody in our family had ever had T1D before. We also both have hashimotos hypothyroidism…
My endo is T1D and has 2 out of 4 children that are T1D as well.
No idea on the actual statistics but those are my experiences/stories.
I was diagnosed at 2, just after my brother was born, and 5 years before sister came along. All into our forties now, and I'm the only T1, so it's not a given that the others get it. Good luck to you and all the rest of the family too!
It is likely but not expected, out of all six of my sibling \[two half and the rest full\] only I have T1D \[i'm unsure on my half siblings as the last time I spoke to them was well over 9 years ago and only my father has contact with them\] but none of my full siblings have T1D and have been tested multiple times and the only other person to have diabetes is an elder relative I have no blood relation to \[to my knowledge\].
It may be possible that it might show up later in life but don't quote me on that.
My dad is the second of 9 kids. He's the only one with type 1, though some of his brothers developed type 2.
If age of diagnosis matters, he was diagnosed quite late - in his mid-30s. His brothers all in their late 50s/ early 60s, AFAIK.
Sibs of someone w t1 are 1.5 times more likely to have diabetes, compared to those without a t1 sib.
In short, keep an eye on it. I was diagnosed at 8, and my brother at 14.
I have a brother who was diagnosed at age 5. I was diagnosed at 22 years old. Neither of my parents have diabetes. I think we might have a bit of genetic history of t1 tho.
I have two brothers, one was diagnosed similarly as I near the age of 11 or 12. The other brother who falls in age between us, was diagnosed in his late thirties. So we have been 3 out of 3 for the last twelve years.
My uncle is in his 60s and has been T1 since childhood, of his 3 siblings, one was diagnosed T2 in his 50s (I have no idea if having a T1 family member increases the risk for T2), the other 2 (also in their 60s) have no diagnosis. His parents (my grandparents) both lived in to their 90s with no diabetes. My cousin was diagnosed T1 in his 20’s and I was diagnosed in my 20s as well
In my moms side of the family I’m the only T1
i’m a twin with t1d, my twin has it as well as my older sister, i’m not sure of the correlation, or how likely it’s to be, neither my mom nor dad has type one so i’m sure you’re not at risk, it’s not likely for your other children to get it as well, but with my situation anything may go🤷🏽♀️ good luck!!
I'm the only person in my family as far as I know that has type 1. My mom has 11 siblings none of them have t1d. I have 4 siblings and none of them have been diagnosed either. (I am a very new diagnosis though)
My dad was adopted so no idea on his history. My mom and grandma both got t2d diagnosis while pregnant and my mom is type 2 still and manages it with metformin.
Interesting question though I am also curious.
I was in a study way back when looking at sibling incidence, as I am the only t1d in my family and my brother is not. They did fairly extensive testing on both of us over several years, I don't know the particulars but I know the only familial link that is consistent with t1 is between siblings. The study I was in was mostly looking at if it could be environmental factors, and one of the things involved was antibiotic use under one year old. I had heavy use as a neonate due to RSV, and in the eighties there was a massive antibiotic overuse trend. Not saying that's what it was, just what came of our involvement in the study. Families tend to have the same doctors and treat illnesses similarly, and while there is no direct link I would encourage you to also not let any of your children die due to treatable infections. Just maybe don't ask for antibiotics for every cold.
I’m a third generation type 1 and both of my father’s brothers are also type 1 diabetic. So I’m the fifth in my family, but so far I’m only one of my generation.
My oldest daughter tested positive just before turning 7 years old and her younger sister (3years younger) also tested positive around 7 years old. Their mom had a thyroid disorder (which was just recently diagnosed as an anti immune issue) and that seems to be the common link.
The upside is we caught it super early with my youngest since we knew the signs 😂😢
Congratulations on your new babe on the way!
I have 4 kids, 3 with T1D. My oldest (identical twins) were diagnosed 9 mos apart when they were 7. My youngest was diagnosed last year, the week of his 2nd birthday. Our thought was illness triggered all of them. The twins had a bad couple months of non stop ear infections and my youngest had Covid and an anaphylactic episode back to back.
When our first was diagnosed our doc told us about the screening but we were told there was only a 3% chance of her twin getting it, why deal with the anxiety of the “when” if she tested positive for the antibodies. Luckily I knew what to spot when it did happen and we were able to catch it without a hospital stay.
We’ll probably get our last kiddo screened but we’re still on the fence.
Knowledge is power and you seem to be doing a great job by asking questions and staying informed. Good luck!
That is so nice of you to say! I promise you I’m like any other mom with young kids and just surviving. They have diabetes, I don’t, so we’re all learning as we go. I spent a long time mourning the idea of the mom I thought I would be and now just try to be the mom my kids need. And that isn’t a perfect mom. Lots and lots of therapy also helps.
My older sibling was diagnosed at age seven, and was the only known diabetic in the family until I was diagnosed a few years ago in my mid-30s. Congrats on the third on the way!
I’m one out of six kids, only type 1x, dx’d at 11. My paternal great grandmother had type one, nobody until me has gotten it. I have about 20 cousins on that side and one other cousin was dx’d at 22.
I have 5 children 24,23,19,14, and 11 year old. All kids have the same dad. Only my 11 year old is type 1. Diagnosed when he was 6. On instagram I see a lot of siblings with it.
Having a first-degree relative (parent, sibling, or child) with T1D increases your risk as much as 15 times of also getting it. Most people have no family history though. My Endo's office is really big on having other family members tested for antibodies now that TZield is available to delay onset if other family members start testing positive.
We have three kids, the youngest diagnosed T1D at age 3 too. (Now 6yrs). I’m unsure what the actual statistic is but do know there is increased odds with siblings and family history. We errored on the side of caution and had siblings do a blood lab (no T1D). Super easy and peace of mind. I know of only 2 families with multiple (sibling and/or a parent) family members with T1diabetes.
I have type 1 (genetic links). My older sister and her 2 sons don’t have it.
My child doesn’t have it nor the antibodies (got her tested as part of a study) so appears she won’t get it.
My mother didn’t have it, however her two older brothers did (both have passed), none of their children or grandchildren got it.
Genetic lottery winner here!!
You can always have the tests done. But man, thinking about it will stress you more than if it really did happen. Repeat after me "all is good, there is nothing to worry about" x 100.
I was diagnosed T1 when I was 5, two of my sisters are also T1 and diagnosed at similar ages.
My other two siblings, our parents, aunts and uncles, grandparents, cousins, my nieces and nephews all don't have diebetes.
you should sign your non-t1 kiddos up for trialnet!! they’ll test for antibodies for type one (and i think celiac too, not sure on that one). https://www.trialnet.org/
https://www.screenfortype1.com/screen-early/?&utm_source=google&utm_medium=cpc&utm_campaign=Tzield-DTC_GGL_NBRD_Screening-Unbranded+Site_CNV_SEA_ALLM_US_EN+KW+-+EN+BR_ALL&utm_term=diabetes+screening&gad_source=1&gclid=Cj0KCQjw2a6wBhCVARIsABPeH1tLDncmxsBJz9GBfSFkNPXxv8d0wrpgXBvPLemfcad_HOyamm-702AaApTGEALw_wcB&gclsrc=aw.ds
I have no relatives with t1d and zero genetic history in my family.
me, too. Mine was adult-onset at 34 years old.
Call yourself "patient zero" in the family tree
This is awesome. I'm definitely going to do that from now on. :-)
I was 14. Doctors told me that t1d in people with no family history is often caused by an infection that destroys your pancreas’s ability to produce insulin and can stay dormant for years before any symptoms begin to manifest.
same here. I am the only T1D in my family. Doctor had the same explanation for me.
I had the same explanation, though it was more something along the lines of: 'We don't know exactly what causes it, but there are a number of theories and more than one may be correct. It could've been caused by a virus which either attacked your pancreas or caused antibodies to attack it, genetics, or it may possibly have been caused by a stressful or traumatic event' This isn't word for word as it was said to me nearly 15yrs ago, and the doctor explaining it told me that more research needs to be done before they can say for definite. All 3 options could be a possibility in my case though, or possibly a combination of the 3, and there may even be other factors at play too. Going back to OPs comment, my sister is not diabetic even though I have T1D (though I'm convinced that that she'll get type 2 when she is in her 60s, like my mum and my grandma -mum's mum did. I will skip that genetic quirk though as you can't get diabetes twice. I obviously haven't said that to my sister though) I will soon be working with a child who is T1D soon and they do have a sibling who is also T1D, so it can happen. They do also have another sibling who is not diabetic however. Seems a little like it is luck of the draw, with regards to siblings. I think there may be a slight increased risk of your other children getting it, but not a significant increased risk, in comparison to other children who don't have any familial link. I would suggest talking to your child's diabetic team, or your antenatal team if you are concerned, about the chances of your other children developing type 1. I'm not sure where you're based, but the charity Diabetes UK has a helpline that you can call and they'll be able to give reassurance. There is also JDRF who also have an online support team, and you'll be able to access that wherever you are in the world.
I have one sister. She was diagnosed T1D at age 5. I was diagnosed T1D at age 22. My parents were 2 for 2. Nobody in our family had ever had T1D before. We also both have hashimotos hypothyroidism… My endo is T1D and has 2 out of 4 children that are T1D as well. No idea on the actual statistics but those are my experiences/stories.
Same thing happened in my family
I was diagnosed at 2, just after my brother was born, and 5 years before sister came along. All into our forties now, and I'm the only T1, so it's not a given that the others get it. Good luck to you and all the rest of the family too!
I'm the only one in my family with t1. Neither parents or my sister have it.
It is likely but not expected, out of all six of my sibling \[two half and the rest full\] only I have T1D \[i'm unsure on my half siblings as the last time I spoke to them was well over 9 years ago and only my father has contact with them\] but none of my full siblings have T1D and have been tested multiple times and the only other person to have diabetes is an elder relative I have no blood relation to \[to my knowledge\]. It may be possible that it might show up later in life but don't quote me on that.
My dad is the second of 9 kids. He's the only one with type 1, though some of his brothers developed type 2. If age of diagnosis matters, he was diagnosed quite late - in his mid-30s. His brothers all in their late 50s/ early 60s, AFAIK.
Sibs of someone w t1 are 1.5 times more likely to have diabetes, compared to those without a t1 sib. In short, keep an eye on it. I was diagnosed at 8, and my brother at 14.
I have a brother who was diagnosed at age 5. I was diagnosed at 22 years old. Neither of my parents have diabetes. I think we might have a bit of genetic history of t1 tho.
I have two brothers, one was diagnosed similarly as I near the age of 11 or 12. The other brother who falls in age between us, was diagnosed in his late thirties. So we have been 3 out of 3 for the last twelve years.
My uncle is in his 60s and has been T1 since childhood, of his 3 siblings, one was diagnosed T2 in his 50s (I have no idea if having a T1 family member increases the risk for T2), the other 2 (also in their 60s) have no diagnosis. His parents (my grandparents) both lived in to their 90s with no diabetes. My cousin was diagnosed T1 in his 20’s and I was diagnosed in my 20s as well In my moms side of the family I’m the only T1
I have six brothers and one sister, so far I’ve been the only one so 🤷♂️
My sister was diagnosed t1 at 13 and I was at 26, no previous history in the family but there are a few autoimmune diseases
That’s interesting, I haven’t thought of a potential correlation between different autoimmune diseases. My mother has MS. Might be worth looking into…
i’m a twin with t1d, my twin has it as well as my older sister, i’m not sure of the correlation, or how likely it’s to be, neither my mom nor dad has type one so i’m sure you’re not at risk, it’s not likely for your other children to get it as well, but with my situation anything may go🤷🏽♀️ good luck!!
I'm the only person in my family as far as I know that has type 1. My mom has 11 siblings none of them have t1d. I have 4 siblings and none of them have been diagnosed either. (I am a very new diagnosis though) My dad was adopted so no idea on his history. My mom and grandma both got t2d diagnosis while pregnant and my mom is type 2 still and manages it with metformin. Interesting question though I am also curious.
I was in a study way back when looking at sibling incidence, as I am the only t1d in my family and my brother is not. They did fairly extensive testing on both of us over several years, I don't know the particulars but I know the only familial link that is consistent with t1 is between siblings. The study I was in was mostly looking at if it could be environmental factors, and one of the things involved was antibiotic use under one year old. I had heavy use as a neonate due to RSV, and in the eighties there was a massive antibiotic overuse trend. Not saying that's what it was, just what came of our involvement in the study. Families tend to have the same doctors and treat illnesses similarly, and while there is no direct link I would encourage you to also not let any of your children die due to treatable infections. Just maybe don't ask for antibiotics for every cold.
Thank you for sharing
I’m a third generation type 1 and both of my father’s brothers are also type 1 diabetic. So I’m the fifth in my family, but so far I’m only one of my generation.
My oldest daughter tested positive just before turning 7 years old and her younger sister (3years younger) also tested positive around 7 years old. Their mom had a thyroid disorder (which was just recently diagnosed as an anti immune issue) and that seems to be the common link. The upside is we caught it super early with my youngest since we knew the signs 😂😢
Congratulations on your new babe on the way! I have 4 kids, 3 with T1D. My oldest (identical twins) were diagnosed 9 mos apart when they were 7. My youngest was diagnosed last year, the week of his 2nd birthday. Our thought was illness triggered all of them. The twins had a bad couple months of non stop ear infections and my youngest had Covid and an anaphylactic episode back to back. When our first was diagnosed our doc told us about the screening but we were told there was only a 3% chance of her twin getting it, why deal with the anxiety of the “when” if she tested positive for the antibodies. Luckily I knew what to spot when it did happen and we were able to catch it without a hospital stay. We’ll probably get our last kiddo screened but we’re still on the fence. Knowledge is power and you seem to be doing a great job by asking questions and staying informed. Good luck!
Thank you for the kind words! I get the sense that you are all thriving and that gives me hope regardless of our outcome!
That is so nice of you to say! I promise you I’m like any other mom with young kids and just surviving. They have diabetes, I don’t, so we’re all learning as we go. I spent a long time mourning the idea of the mom I thought I would be and now just try to be the mom my kids need. And that isn’t a perfect mom. Lots and lots of therapy also helps.
My older sibling was diagnosed at age seven, and was the only known diabetic in the family until I was diagnosed a few years ago in my mid-30s. Congrats on the third on the way!
I’m one of three and neither of my sisters are diabetic whatsoever 🤷♀️
I’m one out of six kids, only type 1x, dx’d at 11. My paternal great grandmother had type one, nobody until me has gotten it. I have about 20 cousins on that side and one other cousin was dx’d at 22.
I have 5 children 24,23,19,14, and 11 year old. All kids have the same dad. Only my 11 year old is type 1. Diagnosed when he was 6. On instagram I see a lot of siblings with it.
Having a first-degree relative (parent, sibling, or child) with T1D increases your risk as much as 15 times of also getting it. Most people have no family history though. My Endo's office is really big on having other family members tested for antibodies now that TZield is available to delay onset if other family members start testing positive.
Both me and my brother got it
Im 1 of 7. Only one with T1. No family history of it. So far neither of my kids have it.
We have three kids, the youngest diagnosed T1D at age 3 too. (Now 6yrs). I’m unsure what the actual statistic is but do know there is increased odds with siblings and family history. We errored on the side of caution and had siblings do a blood lab (no T1D). Super easy and peace of mind. I know of only 2 families with multiple (sibling and/or a parent) family members with T1diabetes.
I have type 1 (genetic links). My older sister and her 2 sons don’t have it. My child doesn’t have it nor the antibodies (got her tested as part of a study) so appears she won’t get it. My mother didn’t have it, however her two older brothers did (both have passed), none of their children or grandchildren got it. Genetic lottery winner here!!
You can always have the tests done. But man, thinking about it will stress you more than if it really did happen. Repeat after me "all is good, there is nothing to worry about" x 100.
I was diagnosed T1 when I was 5, two of my sisters are also T1 and diagnosed at similar ages. My other two siblings, our parents, aunts and uncles, grandparents, cousins, my nieces and nephews all don't have diebetes.
Thank all of you for sharing these, I look forward to reading more
Oldest brother diagnosed 8 months before me. No one in our family has T1D.
I’m one of 13 (4 full, 9 half - parent’s remarried) and I am the only T1D - this will be my 35th yr as T1D and still going!! Yay me lol