{"id":7571,"date":"2023-10-31T16:41:45","date_gmt":"2023-10-31T23:41:45","guid":{"rendered":"https:\/\/www.breakthrought1d.org\/pacificnwandseattleguild\/?p=7571"},"modified":"2025-12-01T20:24:53","modified_gmt":"2025-12-01T20:24:53","slug":"lets-talk-about-screening","status":"publish","type":"post","link":"https:\/\/www.breakthrought1d.org\/greaternorthwest\/2023\/10\/31\/lets-talk-about-screening\/","title":{"rendered":"LET\u2019S TALK ABOUT SCREENING"},"content":{"rendered":"<p><strong>Our Daughter\u2019s Story<\/strong><\/p>\n<p>In September 2018, our 9-year-old daughter was admitted to the hospital in Diabetic Ketoacidosis (DKA).<\/p>\n<p>In hindsight, the signs were all there \u2013 she had been urinating frequently, drinking lots of milk at meals, and losing weight.\u00a0 But we didn\u2019t have anyone with type 1 (T1D) diabetes in our family, so we didn\u2019t recognize what was happening.\u00a0 Her diagnosis involved a panicked drive through rush-hour traffic to the hospital, followed by IVs, an insulin drip, and a stay in the ICU.\u00a0 During the hospital stay, my daughter, my husband and I were inundated with information:\u00a0 short-acting insulin, long-acting insulin, carb counting, what to do when she went low, what to do when she went high, how to dose glucagon, going back to school.\u00a0 All three of us felt unprepared and overwhelmed. These felt like life and death issues, and we only had two days to get up to speed.<\/p>\n<p>If this sounds familiar, it\u2019s because ours is a very typical story.\u00a0 For 85-90% of people who are diagnosed with T1D, there is no prior family history.\u00a0 Consequently, most families are unfamiliar with the symptoms.\u00a0 In the US, 40-60% of children and teens are in DKA at the time of their diagnosis.<\/p>\n<p>What can prevent an outcome like ours, characterized by panic and fear?<\/p>\n<p>Screening!<\/p>\n<p><strong>What is Screening for T1D?<\/strong><\/p>\n<p>Type 1 diabetes is an autoimmune disease.\u00a0 This means that the body develops antibodies against itself.\u00a0 In T1D, these autoantibodies attack the insulin-producing beta cells in the pancreas.\u00a0 Four autoantibodies have been identified as being specifically linked to development of T1D:\u00a0 Insulin Autoantibody (IAA), GAD Autoantibody, IA-2 Autoantibody, and Zinc Transporter 8 Autoantibody (ZnT8).\u00a0 These autoantibodies develop over time.\u00a0 Screening involves a blood test, which identifies whether a person has developed any of these T1D autoantibodies.<\/p>\n<p>For the general population in the United States, the risk of developing T1D is ~1 in 300 or 0.3%.<\/p>\n<p>For people with a first-degree relative with T1D (sibling, child or parent), the risk is 15x higher, or ~1 in 20, or 5%.<\/p>\n<p><strong>Stages of T1D<\/strong><\/p>\n<p>T1D disease progression occurs in stages, as outlined in the graphic below.<\/p>\n<ul>\n<li>Stage 1 is when a person has two or more autoantibodies, but normal blood sugar and no clinical symptoms.<\/li>\n<li>Stage 2 is when a person has two or more autoantibodies and mildly abnormal blood sugars, but still without clinical symptoms.<\/li>\n<li>Stage 3 is when a person has elevated blood sugars in the diabetic range, usually has clinical symptoms of diabetes (frequent urination, increased thirst, and weight loss), and is clinically diagnosed.<\/li>\n<\/ul>\n<p><strong>\u00a0<\/strong><\/p>\n<p><a href=\"https:\/\/www.breakthrought1d.org\/greaternorthwest\/wp-content\/uploads\/sites\/171\/2023\/10\/T1D-Progression.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-7573\" src=\"https:\/\/www.breakthrought1d.org\/pacificnwandseattleguild\/wp-content\/uploads\/sites\/78\/2023\/10\/T1D-Progression-800x467.jpg\" alt=\"\" width=\"788\" height=\"460\" \/><\/a><\/p>\n<p><strong>Our False Confidence<\/strong><\/p>\n<p>After we had missed our daughter\u2019s diagnosis, we thought we would never miss a diagnosis in one of our other three children.\u00a0 So, when we heard about autoantibody screening, we weren\u2019t particularly interested.\u00a0 At the time, in 2018, there was no intervention available on the market and we didn\u2019t want our other kids to potentially have to live with the threat of T1D hanging over their heads.\u00a0 We thought testing would make us all anxious.<\/p>\n<p>Fast forward to this summer when our son texted from college to say his doctor found that his A1C was elevated.\u00a0 Guess who was anxious now??\u00a0 We found ourselves in a mad scramble once more, this time to get our kids screened.\u00a0 The truth was, we might have missed the diagnosis again, especially with young adult children living away from home.<\/p>\n<p><strong>Why Screen?<\/strong><\/p>\n<ul>\n<li><strong><em>Prevent diabetic ketoacidosis (DKA) at diagnosis<\/em><\/strong>: The rate of DKA at diagnosis falls from 40-60% in kids in the United States without screening to 3-6% in kids who have been screened.\u00a0 Children with DKA at diagnosis have overall higher lifetime glucose levels.\u00a0 DKA at diagnosis also can affect brain function and lead to altered brain development.<\/li>\n<li><strong><em>Intervene to delay Stage 3 T1D<\/em><\/strong>: In November 2022, the FDA approved Teplizumab-mzwv (Tzield), a drug that delays the progression of Stage 2 to Stage 3 by an average of almost three years.\u00a0 That\u2019s three years without finger sticks, CGMs, carb counting, insulin injections, glucagon scares, etc.\u00a0 It\u2019s also three years of time for the development of additional interventions to further delay this disease.<\/li>\n<li><strong><em>Identify people to invite to participate in research studies<\/em><\/strong>: With Breakthrough T1D\u2019s help, T1D research is making huge strides, as scientists explore new ways to delay and prevent T1D at different stages along the pathway.\u00a0 When you know your autoantibody status, you can take advantage of the clinical trials available to help in your stage of T1D.<\/li>\n<li><strong><em>Give individuals and families time to prepare<\/em><\/strong>: When a person receives a diagnosis of T1D, there is a lot to learn.\u00a0 Being able to prepare for the diagnosis over months to years allows this learning to occur in a structured, calm environment.\u00a0 Studies have shown that, while parental anxiety does increase after screening with a positive result, this anxiety usually lessens over time.\u00a0 Individuals and families who receive regular follow-up screening after an initial positive test develop greater familiarity with medical providers and procedures.\u00a0 Thus, stress at the time when insulin therapy eventually is needed is significantly lower in children and parents when the child was previously identified through screening.<\/li>\n<\/ul>\n<p><strong>Ways to Screen<\/strong><\/p>\n<p><a href=\"https:\/\/www.breakthrought1d.org\/greaternorthwest\/wp-content\/uploads\/sites\/171\/2023\/10\/Ask-The-Experts.png\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-7574\" src=\"https:\/\/www.breakthrought1d.org\/pacificnwandseattleguild\/wp-content\/uploads\/sites\/78\/2023\/10\/Ask-The-Experts-800x650.png\" alt=\"\" width=\"749\" height=\"609\" \/><\/a><\/p>\n<p><strong>What Do the Results Mean?<\/strong><\/p>\n<p><strong><u>Zero autoantibodies<\/u><\/strong> indicates low risk for developing T1D.\u00a0 TrialNet data show that, on average, when testing first-degree relatives ages 2.5 &#8211; 45 years of someone with T1D, a negative antibody test lowers the person\u2019s risk to the same risk as seen in the general population (i.e. their risk drops from 5% down to 0.3%).\u00a0 On this basis, TrialNet does not offer repeat screening for an individual who tests negative on the initial screen.\u00a0 However, repeat testing is available through the ASK Program for children up to age 18 at no cost, as well as through testing at any age ordered by your doctor.<\/p>\n<p>While a negative result is reassuring, families should continue to monitor for signs of elevated blood sugar (increased thirst, increased urination, weight loss, fatigue), particularly in very young children.<\/p>\n<p><strong><u>One autoantibody<\/u><\/strong> is NOT considered to be a diagnosis of T1D.\u00a0 However, if a person tests positive for one antibody, they are eligible to take part in the TrialNet study for follow-up screening at no cost. This is because scientists are still trying to learn more about people who have a single autoantibody and their risk of developing T1D. \u00a0Individuals with a single autoantibody can also receive individualized advice by contacting Ask the Experts, who may recommend ongoing testing to monitor for the development of more autoantibodies. You can find links to both TrialNet and Ask the Experts at <a href=\"https:\/\/www.breakthrought1d.org\/T1Detect\">www.breakthrought1d.org\/T1Detect<\/a><\/p>\n<p><strong><u>Two or more autoantibodies<\/u><\/strong> can indicate the start of T1D.\u00a0 If a person tests positive for two or more autoantibodies, they will need additional testing to confirm the autoantibodies and to determine if their blood glucose regulation is still normal.\u00a0 A person with 2 or more persistent autoantibodies has a near 100% lifetime risk of developing a clinical diagnosis of T1D. Depending on the results of the glucose testing, a person with 2 or more persistent autoantibodies may be a candidate for medications to delay the progression of T1D.\u00a0 \u00a0They also may be a candidate for clinical trials.<\/p>\n<p><strong>Our Family: Where We Are Now<\/strong><\/p>\n<p>We have now screened all our children for T1D.\u00a0 We got negative results for our son and one of our daughters.\u00a0 We are still waiting on the results for one more daughter.<\/p>\n<p>Keep in mind that, even with a family history of T1D, ~95-97% of family members will still screen negative.<\/p>\n<p>If you haven\u2019t yet screened yourself or other members of your family, I encourage you to put it on your to-do list.\u00a0 In our family, we are glad that we finally did.<\/p>\n<p>&#8211;Laura Tremblay, <em>Breakthrough T1D Research Information and Clinical Trial Education Volunteer<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Our Daughter\u2019s Story In September 2018, our 9-year-old daughter was admitted to the hospital in Diabetic Ketoacidosis (DKA). In hindsight, the signs were all there \u2013 she had been urinating frequently, drinking lots of milk at meals, and losing weight.\u00a0&hellip;<\/p>\n","protected":false},"author":1317,"featured_media":7261,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"ep_exclude_from_search":false,"publish_on_app_meta":"True","iawp_total_views":21,"footnotes":"","bt1d_storytelling_post":false,"bt1d_storytelling_more_posts":[]},"topics":[31,16],"class_list":["post-7571","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","jdrf_topic-clinical-trials","jdrf_topic-research"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>LET\u2019S TALK ABOUT SCREENING - Greater Northwest Chapter<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.breakthrought1d.org\/greaternorthwest\/2023\/10\/31\/lets-talk-about-screening\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LET\u2019S TALK ABOUT SCREENING - Greater Northwest Chapter\" \/>\n<meta property=\"og:description\" content=\"Our Daughter\u2019s Story In September 2018, our 9-year-old daughter was admitted to the hospital in Diabetic Ketoacidosis (DKA). 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