Sarah Howard
Sarah Howard has worked in the diabetes research field 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.
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If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies? Cancel reply
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My kids are adopted and my siblings are too old for the screening.
I needed the choice of “No, but we’ve never really talked about it.”
I’m pretty sure I responded the same way the last time they asked this question!
I am the one and only in my family (on both sides and in both directions- ancestor/progeny) and it’s been 43 years already. My children are adults and are not likely to develop it at this point. If and when my children have their children, I think it might be prudent for them to be tested but other than that, I don’t see any benefit to anyone.
My T1D was brought on by immunotherapy, so not genetic. No need for screening.
I was diagnosed in my 30’s and both of my children have had antibody tested once. It was suggested to test again in 3 years
Quit asking about autoantibodies! This question has been asked at least once, possibly twice, before. Seriously, there are other questions you can ask about T1D. Think of something new!
I wish, instead of worrying about testing family members who have yet to develop diabetes, that doctors were more likely to test for autoimmune antibodies in the adults they assume must be T2. 40 percent misdiagnosed is unacceptable.
Partly due to diabetes stigma, I am estranged from my siblings and child. They don’t like knowing that my diabetes and scoliosis exist, and so, to them, I don’t exist.
I am pretty close to the bottom of my cognitive abilities . . .
Dementia, that contemptible worm infecting so many of my kith & kin, raises it’s ugly head as a top notch manure spreader, especially with an obscene T1D-to-dementia correlation. But . . .
I retain my sword tilting at as many windmills as is possible. My kith & kin refer to me as, “Oh yeah, that guy in the family who got the bad type of diabetes.”
Consequently, few, if any, of them have the least bit of interest in testing themselves for anything diabetic related. C’est la vie.
👆this. Exactly.
Ahh Life! Please don’t ever stop adding your pithy responses to the T1D “unload!” You always remind me that these 70 years aren’t all about micromanaging everything I dream of doing. The landscape can be as grand, as it can be frightfully annoying.
Wishing all of us a healthy dose of verticality!
YES! My twin brother was screened after my diagnosis in 1999 — contributing to TrialNet’s research. My two children have each been screened by TrialNet and T1Detect. Everyone tested negative — thankfully.
THEY are not interested in being tested, but I, being a T1D, would like them to be tested.
My daughter was screen when she was probably 10 or so and now, nearly 40 years later she said she really wouldn’t want to have to worry about it so “no” to being screened.
My family has not been screened and they don’t know that they can be screened.
All of my family exceed the age limit. I got this at 51. My first agree relatives are all older than me. I do not have children. My second degree relatives are also too old.
My immediate family members are all adults, living far away and have their own lives. I have not had this discussion with any of them, and seriously doubt that any of them would go through the expense of having this screening.
This question should be reworded to be more quantifiable and defined. My definition of family may be different than someone else. Same for terms like some, most, etc.
I don’t live with most of my family members so I have no clue whether any of them have ever been screened or would have any interest in getting screened.
5 years after my diagnosis, I started working at a diabetes research program that was a TrialNet screening site. My younger sister (then in her early 20s) was screened and negative.
My parents were above the upper age limit to participate, but my mother developed T1D ~7 yrs later (at age 57). Like many have described here, she was originally misdiagnosed as T2D due to her age. Oral meds didn’t touch her blood sugars. A few months in, we were able to convince her primary doctor to test for autoantibodies and c-peptide (a measure in insulin production) and confirmed T1D. She was not in DKA, but did have fasting sugars in the mid 300s for ~3-4 mo. Always wondered if we would have detected the antibodies early if she had screened with my sister.
I’ve also had both my sons screened when they were little (during annual JDRF diabetes walks) and they were negative.
Since both my mom and I were diagnosed on the later side (18 & 57), I wonder about the timing of autoantibody presentation and these screenings to effectively catch the disease before it starts.
I also worry a little about someone testing positive for 1 antibody and then stressing unnecessarily about a diagnosis that may never come.
No, in the 1960s -1980s such tests were not offered in the USSR. Our father got T1D in 1964. Two of his children (I too) got T1D in 1983 and 1989. God bless you all.
I chose other because I am the only member of my immediate and somewhat distant family with T1D, not sure that testing would show anything. I would be willing to be tested to see if I now carry the antibodies (mostly out of curiosity of how living with T1D for 37 years has affected me).
In 1972 when my younger brother was diagnosed, there wasn’t screening for T1D autoantibodies. I was watched closely and if I became sick with something associated with T1D they would do a blood sugar test at the doctor office or hospital.
I have tried and tried to get them to screen the grandchildren and they just will not do it. I believe in pre screening but well I am not the parent.
Diabetes on both sides of my family, including my maternal grandfather, yet I couldn’t convince my daughter to test or get her three kids to be tested “because there’s nothing to be done to prevent it”. Several years later she was dx. with lupus, also autoimmune and the disease that resulted in the early death of my paternal grandfather and two of his children.
3 out of four of us have diabetes and the fourth does not want to be tested.
Three family members who have (had) T1D got it in their late 20s or 40s. More immediate issues are their concern.
No antibody screening, but we all are aware of the symptoms of t1d. My son eventually would allow me to do a finger prick glucose test on the occasions when I had been concerned about him .
A negative antibody test does not necessarily mean that antibodies won’t develop, so the test amounts to little more than “watchful waiting,” whatever the outcome, in my opinion.
Our son’s “half brother” was screened via TrialNet.
The subject never came up. They were too busy getting diagnosed as Type 2. My husband, and 4 out of 5 children.
I am the only person in my family with T1D. I do not have biological children. My sister probably wood screen for autoantibodies but has never been asked. She has no children.
I acquired T1D late in life as result of my cancer immunotherapy. No previous T1D in my family lineage.
Since our youngest is also a TYPE 1, a second brother was just diagnosed diabetic. With that history he was screened but is negative. Medically/diet controlled a1C in low 6 range.
I chose other as my answer is I don’t know.
I have family members with autoimmune conditions, but not type 1 diabetes. They have adult children.
An interest may be greater if this were free or involving clinical trials to see how many diabetes conditions are properly diagnosed and could be better managed or hopefully prevented soon. Many family members do not have great interest in general health or good insurance.
My children have been screened, but my siblings have not been. At least to the best of my knowledge.
One sister & myself have T1. I was diagnosed when I was 19 and my sister when she was in her 40s. We are both in our 50s now. Our siblings are all older than us and all of the nieces/nephews are adults. Last time I looked I don’t think anyone was eligible for screening through TrialNet. I’m not sure if any of my siblings or nieces/nephews would want to do it.
After 56 years of T1D, I see no reason to be screened for autoantibodies. My son is 41 and has not ever had indications of T1D. He is not interested in being screened (his preference not mine)
My family is not aware of the screening and where to get screened.