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If you or someone in your immediate family has T1D, has the rest of your family been tested for T1D antibodies? If no, do you think your immediate family would be willing to be tested for T1D antibodies?
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Antibodies are an interesting thing. My dad was the first to be diagnosed with T1D in 1930 at 18 months of age, I was diagnosed in 1956 at 18 months of age, my eldest son was diagnosed in 1988 at 8 months of age, his daughter was diagnosed at 18 months of age in 2019. How young should you check for antibodies?
“Other” = I sent the link to information to my family – I believe they should be tested as there’s value in knowing and preparing and possibly slowing it down but they aren’t interested. If I had the opportunity to do this for myself you bet I would have!
Non of my family members have been tested and they will not be. There is no preventing getting Type 1 if you are predisposed. It’s not like getting tested for the breast cancer gene.so, IMO it’s not worth it. I want my kids to live full lives without the burden of knowing their fate. It will cause unnecessary anticipatory anxiety.
I might add, if the treatments that are being worked on now come to fruition then I will have my kids tested. Until then we will wait.
Since my T1D was not autoimmune (onset age 28, unknown cause), there is minimal known risk to my children as it was likely not inherited by them. Most likely known cause: latent HSV2 virus destroying beta cells, stress.
In my family, both father and mother carry the T1D diagnosis. However father was a juvenile T1D and I was 49 going through menopause and came out with LADA. Adult son diagnosed at 13 years, other adult son doing OK at the age of 34. How can these antibody tests be done on the other 5 offspring who would be step children from both sides?
For me, it depends. What’s the cost of being tested? If it’s positive, what could someone do to lessen the odds of developing T1D (I didn’t come down with it until I turned 40)? And finally, how could I be sure that information wouldn’t ultimately get to health insurers and result in higher health insurance premiums for those with a positive test?
For a long time I thought it was pointless, I still feel that way about “finding the cure”. But I have been tested twice and my kids have been tested several times. My dad was type 1 (diagnosed in 1963 at age 21) and my oldest son has type 1 (diagnosed 2003 at age 4). My younger sons have been tested several times through the TrialNet study. When antibodies were found in my youngest son several years ago, then the point of it all was explained to me. The belief is that if it is caught early enough, with intervention, the impact of damage to the pancreas can be reduced resulting in diabetes that is ultimately easier to control. My youngest son hasn’t developed diabetes, and I would like him to be tested again, but prior to the pandemic I was told the study had lost millions in funding, so I imagine it could no longer be available.
Wanted to get my son tested, but he’s terrified of blood draws and freaks out screaming and crying each time. It’s not worth the stress even though I’d like to know.
Type 1 for 47 years (and 6 others in my family). I would love for my son to get tested but he puts it off. He’s 27.
I would, personally, prefer my siblings to be tested for antibodies … as I would my own children … but there is resistance from them as they would prefer ‘not to know’. They’ve seen the effects that diabetes has had on my body, and prefer to ignore that they MAY also be carring the antibodies that COULD see them in a similar situation.
Both of my children have been but my brother has refused since the option was available.
I am the only one with T1, in entire family, and no children in family
I choose “other” because I didn’t know that this existed. It is interesting, but as I’m the T1D, I don’t know how my parents or sibling would feel about it. I will mention it to them after I do some research.
I have asked that the grandchildren be tested. The parents will not do it. It frightrns me
I am an only child. My parents are no longer with us. I have not had any children. So, there is no immediate family to be tested.
I selected other because my younger daughter is a no, while my older daughter with a son is yes. My brother and sisters are not interested either.
I have T1D and my husband and I both agreed it was a good idea and part of an ongoing clinical trial to test both our children. One came back with 2 antibodies and one with none. Both children are now adults and are very aware of symptoms and signs. We did watch our daughter very closely for a long time and I worried everyday. But now, I feel like diabetes is not as life threatening as it was when I was a child. I thank God everyday for my wonderful, supportive parents. They didn’t have any of this technology back in the day and they allowed me to live a normal childhood.
I’ve tried to introduce the subject to my daughters, but neither of them are interested!!! Any ideas on how to convince them?
PS: correct English: neither one IS interested.
After my brother’s dx. at 7 months old in 1972, I was just watched closely. When our other brother came along in 1978, he was watched closely, too. There were no testing back then. In Jan. 1982 I was dx. with T1D & in the 2000’s our youngest brother was dx. with T2D. When my oldest niece was dx at 23 months old with T1D, my SIL was pregnant with my middle niece. At her and my youngest niece’s birth, cord blood was taken for research. Middle niece has no antibodies and wasn’t in the study; my youngest niece is antibody positive and is in the study for the rest of her life or until she turns T1D.
Apparently I live under a rock. I have never had anyone ever pose the question or idea to me. Both my folks are still around and I only have one sister, and I have had T1D for over 41 years. I am the only one in my immediate family and none of my grandparents or cousins (on both sides) have ever had T1D. Go figure.
My children were tested as part of a study until they were 18. Not been tested since.
No, several immediate family members with T1 diabetes were never tested for T1D antibodies and have died from other causes unrelated to T1D. I am past childbearing years. Except for my 96 year old mother (who does not have T1D in her genetic make-up) my immediate blood line family is deceased except for a few second and third cousins. I have no idea if they are interested or willing to be tested for T1D. Neither my deceased brother nor I have any offspring.
My sister would have been tested for antibodies, but she was “too old” to meet the criteria.
My parents and my sister were tested when we took part in a study in the early 90s (a few years after my diagnosis). No one else in my family has type 1 diabetes, but there are other autoimmune diseases in the family. My (healthy) son has not been tested and I do not wish to test him.
Some of my family has been tested for Diabetes. Only one sister has been tested but they are the one that actually sees a doctor regularly. Other than that the rest of my family hardly see a regular doctor.