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    • 14 hours, 28 minutes ago
      Greg Felton likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      I fell in love with an insulin-dependent Type 2 20 years ago. There’s something terribly romantic about taking Lantus together at the end of the day.
    • 15 hours ago
      ConnieT1D62 likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      One time I was explaining that a new pump would be too expensive at the time because my deductible had just started over.. and she asked if I had insurance and I said yes….. then she said “then it should be free with insurance.” 🤦‍♀️ She may know a little about the challenges of living with diabetes, but she knows nothing about how insurance works or how costly T1D supplies are.
    • 15 hours, 18 minutes ago
      Steve Rumble likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      I fell in love with an insulin-dependent Type 2 20 years ago. There’s something terribly romantic about taking Lantus together at the end of the day.
    • 15 hours, 49 minutes ago
      Lawrence S. likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      I am an RN. Been going to same doctor for about ten years. Took me six years to train him. I am very well read when it comes to my LADA. He trusts my judgement and gives me excellent parameters to make decisions. Recently had a bad case of Covid. Insulin needs changed dramatically. Getting back to normal but he made sure I had scripts to cover my ups and downs with insulin needs.
    • 15 hours, 50 minutes ago
      Lawrence S. likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Mine acknowledges the struggles and challenges that go along with managing T1D in my daily life. She gives suggestions as to what may or may not help and has often asked me I how I handle situations so she can give suggestions to other T1D patient's.
    • 15 hours, 51 minutes ago
      Lawrence S. likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      None of my endocrinologists or NPs have had T1D but I always discuss my challenges and they are incredibly helpful. What I always find astonishing is they are constantly amazed at how well I’m doing even when i don’t think I’m doing that well because most of their patients have nowhere near the A1c’s I’m able to achieve. And just hovers in the 6’s!
    • 16 hours, 16 minutes ago
      Jubin Veera likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      The hard spots are fairly frequent with the pump infusion sets. Especially if I go past 3 days which I try to avoid! I don’t think I ever got one from injections. I try heat and massaging to treat them and they normally go away after a day or so. Once I had a large area that I had to treat with antibiotics.
    • 16 hours, 18 minutes ago
      Magnus Hiis likes your comment at
      Have you experienced any symptoms of physical sexual dysfunction as a result of having diabetes, or having diabetes-related complications?
      I’m 79. My last orgasm was springtime about 3 or 4 years ago. When I complained of ED, my PCP Rxd 3 to 5 (60-100 mg) sildenafil tablets by mouth about one hour prior to sexual activity. This alone hasn’t worked to bring me up to former sexual capacity that I had 10 years years ago. I’m still considering consulting finding a doctor who’ll prescribe a safe but effective way of administering testosterone or an anabolic steroid in a dose low enough to avoid causing cardiovascular problems but high enough to restore normal ability that I had up to my sixties. My present doctors say it can’t be done, but there are doctors who advertise otherwise. Analogs of the hormone insulin can be delivered in small safe doses, why not testosterone?
    • 1 day, 8 hours ago
      Becky Hertz likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      We are all so very different, and trying to say that all of us with T1 understand what it's like for another who has the same hill to climb is unproductive. Having a health care provider with T1 may often be helpful just because there's apt to be more knowledge about the specifics. How we respond to the disease is such a personal matter, that I really don't think there are any guaranteed benefits beyond the grasp of the factual. Finding a doc with the same general attitude about the disease does feel good, and sometimes that's all I hope for after working hard to make peace with the disease for 70 years. Asking my doc to "get it" used to be almost my mantra, but I've come to realize that the ones who don't just see us as unruly childrenchildren
    • 1 day, 8 hours ago
      Becky Hertz likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Both my endocrinologist and my nurse practitioner are great. They compliment me on the way I take care of my life and health and make aure I get all the supplies I need managing all the paperwork Medicare and insurance requires. My nurse practitioner who works with me on managing the pump has her own opinion about the pump settings based on her technical knowledge which is different than what I do with my settings based on living with them. She has thru the years learned to respect what I do and is surprised with how my settings work. So we are now at peace. Both very supportive.
    • 1 day, 11 hours ago
      pru barry likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Yes. However, for those of you who assert, "It takes one to know one," the same might be said of age. Geriatrics is a marvelous array of marvels.
    • 1 day, 11 hours ago
      mojoseje likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      I said yes but that refers to my nurse practitioner who sees me every other visit, if not more often. The doctor may know how hard I try but perhaps takes my efforts for granted.
    • 1 day, 13 hours ago
      Anneyun likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      How can someone without the disease really understand what it is to live with it? I have never had a doctor with T1D in 60 years.
    • 1 day, 14 hours ago
      Bruce Schnitzler likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Yes. However, for those of you who assert, "It takes one to know one," the same might be said of age. Geriatrics is a marvelous array of marvels.
    • 1 day, 14 hours ago
      Kristine Warmecke likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My endo is young, very empathetic, thorough, always asks for my input, and does research. I am blessed too. have him, and the one before for over 25 yrs.
    • 1 day, 14 hours ago
      Kristine Warmecke likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      Yes. However, for those of you who assert, "It takes one to know one," the same might be said of age. Geriatrics is a marvelous array of marvels.
    • 1 day, 14 hours ago
      lis be likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      None of my endocrinologists or NPs have had T1D but I always discuss my challenges and they are incredibly helpful. What I always find astonishing is they are constantly amazed at how well I’m doing even when i don’t think I’m doing that well because most of their patients have nowhere near the A1c’s I’m able to achieve. And just hovers in the 6’s!
    • 1 day, 15 hours ago
      Daniel Bestvater likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My provider does not have T1. Only someone with it can truly understand the various daily challenges and worth it takes to manage this.
    • 1 day, 15 hours ago
      TEH likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My provider does not have T1. Only someone with it can truly understand the various daily challenges and worth it takes to manage this.
    • 1 day, 15 hours ago
      Lawrence S. likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      I have no clue what my T1D health care provider understands about my daily challenges and I don’t know about his daily challenges either. Not sure why I should care as long as I have access to information how to best take care of myself.
    • 1 day, 16 hours ago
      Jeff Marvel likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My provider does not have T1. Only someone with it can truly understand the various daily challenges and worth it takes to manage this.
    • 1 day, 16 hours ago
      Richard Wiener likes your comment at
      Do you feel that your T1D healthcare provider understands the daily challenges and work that goes into living with T1D?
      My provider does not have T1. Only someone with it can truly understand the various daily challenges and worth it takes to manage this.
    • 2 days, 7 hours ago
      sweetcharlie likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      Hi Connie, I still have my glass syringe and show it off occasionally. We boiled the needle and syringe every morning and sharpened the needle with a file. I was diagnosed at age 6 in 1963. Life is so different now! Then, my diet was extremely limited as was my exercise. Now, I am very active and eat pretty much as I please. I maintain an A1C in the low 6s (6.2 was my last).
    • 2 days, 7 hours ago
      sweetcharlie likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      Connie and Beth, I was diagnosed in Nov 1962, age 10. During the early years I developed lumps and indentations on my upper thighs from my injections. In fact, I was able t o spot other t1 kids in my junior high school based upon the lumps in their upper arms.. (I eventually met up with them and learned that I was correct.) By the time I reached my twenties, these indentations had more or less disappeared, but I still have remnants of the lumps. I wish I could say that the layers of tissue now deposited on my legs disguises them, but they don't. I think the changes in insulin have been responsible for this improvement: the isolation and purification of animal insulins were refined, and then the various human clones were game changers in many ways.
    • 2 days, 7 hours ago
      sweetcharlie likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      Yes in my upper arms when I was a petite and skinny child in the 1960s with T1D. In those days we used glass syringes with stainless steel 1/2 inch long heavy gauge needles. My mother would jab me in the upper arms, it hurt like the dickens, and I developed several hard nodules. I was diagnosed at age 8 in December 1962 and after the initial two months of her jabbing me in the upper arms, I took over giving my own "shots" and started self injecting via site rotation in my thighs for several years. Eventually the lipohypertrophy in my upper arms resolved and I never injected there again until many years later as an adult on MDI using disposable syringes with very short and fine gauge needle tips. Periodically I would give my tired pin cushion thighs a rest and take a break for a few months or a couple of years and rotate injections in my abdomen or upper arms. Have been using a pump for over 20 years now and rarely use MDI unless I am taking a pump break for a short period of time. Happily, I no longer have lumpy sites.
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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?

    Home > LC Polls > 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?
    Previous

    How would you bolus for a ½ cup scoop of plain vanilla ice cream (not reduced fat or sugar)? If you would use multiple strategies, please select all that apply.

    Next

    How often do you get bruises at injection sites or device sites?

    Sarah Howard

    Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community 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. Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.

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    47 Comments

    1. Mary Dexter

      Their heads are stuck firmly in the sand, believing none of this exists and could never come into their lives.

      1
      8 months ago Log in to Reply
    2. Mary Ann Sayers

      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!

      1
      8 months ago Log in to Reply
    3. Kristen Clifford

      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.

      6
      8 months ago Log in to Reply
      1. KCR

        I agree and am in the same situation.

        2
        8 months ago Log in to Reply
    4. Patricia Dalrymple

      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.

      1
      8 months ago Log in to Reply
      1. Louise Robinson

        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.

        1
        8 months ago Log in to Reply
    5. Louise Robinson

      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.)

      2
      8 months ago Log in to Reply
    6. Robert Wilson

      I did not know this was an option. None of my healthcare team ever mentioned this.

      1
      8 months ago Log in to Reply
    7. Katrina Mundinger

      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.

      1
      8 months ago Log in to Reply
    8. dholl62@gmail.com

      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 .

      8 months ago Log in to Reply
    9. pru barry

      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.

      8 months ago Log in to Reply
    10. Kathleen Juzenas

      I don’t remember hearing the term before. I’ve had a C-peptide test. After 40 yrs of living with T1d, Medicare required a C-peptide test to prove that I had T1d!

      1
      8 months ago Log in to Reply
      1. Patricia Dalrymple

        I’ve never been given one either and go into Medicare next year. I’m grateful for it but am anxious.

        8 months ago Log in to Reply
    11. cynthia jaworski

      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.

      1
      8 months ago Log in to Reply
      1. Ms Cris

        With low level antibodies, they can now provide some therapies that can delay full onset several years.

        1
        8 months ago Log in to Reply
      2. cynthia jaworski

        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.

        8 months ago Log in to Reply
    12. Lawrence S.

      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.

      8 months ago Log in to Reply
    13. Patricia Kilwein

      I marked “other” because of the cost. Insurance may not cover it.

      8 months ago Log in to Reply
      1. Patricia Kilwein

        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.

        8 months ago Log in to Reply
      2. Lynn Smith

        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.

        2
        8 months ago Log in to Reply
    14. Ms Cris

      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.

      1
      8 months ago Log in to Reply
    15. Kristin Rosner

      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.

      1
      8 months ago Log in to Reply
    16. Lauren Carey

      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.

      1
      8 months ago Log in to Reply
    17. Joan Benedetto

      We had only one sibling (half) who qualified for testing via TrialNet while attending an FFL conference. No antibodies present.

      8 months ago Log in to Reply
    18. Kristine Warmecke

      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.

      8 months ago Log in to Reply
    19. Maureen Helinski

      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.

      8 months ago Log in to Reply
    20. Janis Senungetuk

      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.

      8 months ago Log in to Reply
    21. Drina Nicole Jewell

      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.

      8 months ago Log in to Reply
    22. Diana L.

      I have surgical diabetes due to a distal pancreatectomy neuroendocrine tumor , it is not necessary for my family to test.

      8 months ago Log in to Reply
    23. Donald Cragun

      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.

      8 months ago Log in to Reply
    24. Becky Hertz

      My sister hasn’t been screened. I’m sure she would in the interest of science, but she ages out for Trial Net.

      8 months ago Log in to Reply
    25. Pauline M Reynolds

      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.

      8 months ago Log in to Reply
    26. ELYSSE HELLER

      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.

      8 months ago Log in to Reply
    27. Mark Schweim

      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.

      8 months ago Log in to Reply
    28. M C

      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.

      8 months ago Log in to Reply
    29. Yaffa Steubinger

      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.

      8 months ago Log in to Reply
    30. Ben Weyhing

      My childfen snd grandchildren

      8 months ago Log in to Reply
    31. AnitaS

      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.

      8 months ago Log in to Reply
    32. ConnieT1D62

      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.

      8 months ago Log in to Reply
    33. Milly Bassett

      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.

      8 months ago Log in to Reply
    34. Molly Jones

      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.

      8 months ago Log in to Reply
    35. Carolann Hunt

      Parents can’t be tested over age 45 😳

      8 months ago Log in to Reply
    36. Kim Murphy

      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.

      8 months ago Log in to Reply
    37. Wanacure

      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? Someone’s cause of death might have been (or even today might be) listed as “heart attack” or “stroke” while the actual underlying cause was undetected diabetes.

      8 months ago Log in to Reply
    38. PamK

      Only my children have been screened (2 total). I don’t think any of my siblings have been.

      8 months ago Log in to Reply
    39. Andrea Hultman

      Only my sister qualified to be screened, and she has been.

      8 months ago Log in to Reply
    40. Cheryl Seibert

      No and likely not willing. 1 out of 2 of my immediate living family members is a minor so would need parent’s permission.

      8 months ago Log in to Reply

    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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