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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?
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Their heads are stuck firmly in the sand, believing none of this exists and could never come into their lives.
My two daughters have no interest in being screened. But I recently learned that my brother was diagnosed with type 2—
at age 77! I was dx with T1D at 7!
There should be another option for my answer, which is no one in my family has been screened, and I’m not sure if they’re interested.
I agree and am in the same situation.
My family is aware I have it and probably any time blood work is done when there is something wrong with them, that is something the doctors look at anyway. I was unaware that my grandfather had T2 until I was diagnosed wit T1. My father was hypoglycemic but not diabetic. One thing I will ask them, though, is do they report when asked that there is someone in the family with it. But, they would not want to know ahead of time probably. I think there probably has to be a trigger. I had the gene but it was during a very stressful time at work that I got very rundown and I knew I had it before the diagnosis.
I, too, developed Type 1 during a stressful period in my life. I was in my late 20’s in 1976 when diagnosed. My Dad had been dx’d in 1953 but back then, there was no differentiation made about the different Types of diabetes. To my knowledge, Dad and I are the only ones in my very large extended family who were dx’d with diabetes.
I am estranged from my only living sibling. To my knowledge, I am the only Type 1 in my currently living extended family. My father developed diabetes in the early 1950’s while he was in his early 60’s. That was before distinctions were made about type of diabetes. He used U-40 Protomine Zinc insulin as I believe no other diabetes treatment was available back then. I’m not certain whether my cousins (mostly maternal side of the family) would be interested in testing for T1D antibodies. I do genealogy and have found diabetes listed as a cause of death for several distant relatives on my father’s side of the family leading me to believe that any genetic predisposition to diabetes emanates from my Dad’s lineage. (Mom lived til she was 98. Neither she nor any of her 14 siblings nor their offspring nor her parents had/have diabetes.)
I did not know this was an option. None of my healthcare team ever mentioned this.
I’m another one with family members who’ve not been screened. We’ve never discussed them getting screened, so I have no idea whether they’d be interested.
Daughter was tested 30 yrs ago not sure if that was this test , showed she was prone to diabetes , fortunately no Diabetes. Going to suggest to her to get children tested .
My three children were tested decades ago. Don’t think my parents, brother, or any other relatives ever were tested. Thankfully, there’s a lot more testing being done now.
I donāt remember hearing the term before. Iāve had a C-peptide test. After 40 yrs of living with T1d, Medicare required a C-peptide test to prove that I had T1d!
Iāve never been given one either and go into Medicare next year. Iām grateful for it but am anxious.
How useful is the knowledge that one has a positive screening test? I have always been alert for signs/symptoms of T1 in family members, especially my son, and I even noticed and advised a co-worker prior to his official diagnosis. But how effective and available are prevention protocols? I do not know the answer.
With low level antibodies, they can now provide some therapies that can delay full onset several years.
Ms Cris: I assumed there must be some kind of action to be taken, but WHAT IS IT? Broad spectrum immune suppression? Back to the idea of administering small amounts of insulin to the not-quite-yet T1d? I haven’t seen anything in the news recently……I was hoping someone here might know.
Honestly, I was not aware of T1D autoantibodies screening. I’m not sure that I have been tested. If so, I am unaware. Most of my siblings are in their 60’s and 70’s, and if they have had it done, I am not aware. If not, I doubt they would be inclined at their ages. My daughter is in her 40’s, and I have no awareness of her medical procedures.
I marked “other” because of the cost. Insurance may not cover it.
I should add that my Dr explained to me the need to be tested and why. The stickler was if it turned out to be negative my ins would not cover the hundreds of dollars it costs to get tested. If it’s positive there’s no cost, my ins would cover 100% of costs. It was positive. T1D diagnosis went into my chart.
Just an FYI, Patricia. You can order an at home T1D antibody screening test online. Go to Enable Biosciences at https://T1D.medi-stats.com/landing to order. The kits are $55 each. I used these to screen my 2 grandkids.
I’ve asked my kids’ pediatrician to screen them once/year. He won’t, saying they have no symptoms. I try to explain the science…
Other family, such as my sibling and nieces/nephews believe it’s unhelpful.
So I’m thinking to go to the Benaroya Institute, where they’ll even do genetic screening as part of their autoimmune research.
My husband and I were too old to participate in the trialnet study when our daughter was first diagnosed 7.5 years ago. We had our son participate. This Spring his annual screening detected the first stages of diabetes. He has progressed to a clinical diagnosis over the summer. If we hadn’t been in the study he would have likely had a traumatic experience at overnight camp. Instead he had a healthy and safe summer. So sign up if you can. It might save you or another family from a traumatic diagnosis experience.
No, as my diabetes is not hereditary (I’m the only T1D as far back as anyone can remember) and I do not have nor plan to have any children.
We had only one sibling (half) who qualified for testing via TrialNet while attending an FFL conference. No antibodies present.
This testing wasn’t available in 1972 when my younger brother was diagnosed, I was just watched closely, then diagnosed in 1982.
My brother’s oldest daughter was diagnosed at 23 months old in 2004. A cord blood test was done on my middle niece a couple weeks later when she was born and my youngest niece 2 years later. My youngest niece is in the study until she is diagnosed.
I did not get T1D until an adult and they said my family was not part of group they wanted to screen. No one has gotten it, thank goodness, but grandchildren have asthma and food allergies.
There’s a history of diabetes and auto-immune disease on both sides of my family. I was dx at 8 my maternal grandfather in his late 20’s or 30’s . When I asked my daughter to be screened and have her three kids screened she firmly declined.
I’m the first in the family to have been diagnosed back in 2000. I didn’t actually know about the antibodies testing until 2 yrs ago. By then, my middle son had been diagnosed and my youngest son as well. We discussed it with my oldest and he has no interest. He told us, if it came back positive his anxiety would destroy him always waiting for the proverbial shoe to drop.
I have surgical diabetes due to a distal pancreatectomy neuroendocrine tumor , it is not necessary for my family to test.
My parents are no longer with us, I am an only child and I do not have any children. There is no one to test.
My sister hasn’t been screened. I’m sure she would in the interest of science, but she ages out for Trial Net.
My husband and children and I all have diabetes, except for one. That’s five of us with diabetes. As far as the next generation, it hasn’t popped up and the subject of getting tested has not come up, so I don’t know if they would be for it.
I am adopted but do have a son. He has recently diagnosed with type 2 and am urging him to get screened. He does nothing but junk food though. I will keep persisting that he get screened.
If anybody else in my family has been tested or considered getting tested, I don’t know about it so am completely clueless when it comes to being able to give an honest answer to this question.
My children are adopted, so not necessary for them to be tested. My sibling and his children (now adults also) have absolutely no interest in being tested.
I have T1 so when one of my grandkids became a T1, the other 3 got screened. The brother of the one with T1 showed a likelihood of getting T1. Unfortunately, that test was accurate. Now my son has two T1 sons.
My childfen snd grandchildren
My parents are in their 80’s so I doubt they would get screened. My sister and brother are in their 40-50s and I am sure they wouldn’t want to get screened. If type 1 symptoms arose, I would let them know to be tested for diabetes. I have tested my sister’s sugar before because she felt like she had low blood sugar. Her sugar level was in the mid 70’s. If my brother started showing symptoms, his wife and sister-in-law who are both in the medical field, would make him get tested for diabetes.
No, none of my family members were ever screened for T1D autoantibodies. I was diagnosed in 1962, and my father, his younger sister and a 1st cousin on my maternal side were all diagnosed as adults in the mid-1960s with T1 LADA. Later my father and his sister died of Huntington’s disease in their early 50s. A maternal 1st cousin was diagnosed with T1 in her late 20s after having two children. Tragically she died at age 62 from a silent heart attack and severe hypoglycemia while she was swimming in a family pool.
In my case, I am the last remaining member of my immediate family as I do not have children, nor grandchildren, nor nieces and nephews. I have several paternal cousins and second cousins who have died from, or currently have Huntington’s disease – two of whom have T2 diabetes. On my maternal side, three Baby Boomer second cousins have obesity driven insulin resistance or full blown T2D. None have expressed any interest in being screened for T1D autoantibodies for themselves or their extended family members.
I’m the first in my family to have T1. We went back as far as my great grandparents and no one had it. My father had 12 brothers and sisters, none had it. I don’t know about their children. My mother had 3 brothers and none had it. I don’t know about their children either. My grandparents on both sides, none had it. And my mom told me that her grandmother did not. My brother does not. My children do not and my grandchildren do not.
I don’t think my immediate or extended family has been screened for T1D autoantibodies. I only have one sibling left in my immediate family. The maternal side of my family has variable autoimmune conditions and might be willing.
Parents canāt be tested over age 45 š³
No one in my family has been screened and I don’t know if this screening is available where we live or if my grown children would want their kids screened.
Given that many T1D people here previously have answered that they were misdiagnosed, I wonder how many of our ancestors were unaware of their diabetes? I wonder how many of my distant relatives know that they are at risk? Someoneās cause of death might have been (or even today might be) listed as āheart attackā or āstrokeā while the actual underlying cause was undetected diabetes.
Only my children have been screened (2 total). I don’t think any of my siblings have been.
Only my sister qualified to be screened, and she has been.
No and likely not willing. 1 out of 2 of my immediate living family members is a minor so would need parent’s permission.