Could it be type 1 diabetes?
It doesn’t always look the way you think.
Elizabeth Forrest, Founder of Touched by Type 1, joins Penelope Pauley, MD, FAAP — a Board-Certified Pediatric Endocrinologist —and Jonathan Velez-Rivera, MD — a Board-Certified Endocrinologist living with type 1 diabetes — to discuss the urgent need for early type 1 diabetes screening, the warning signs everyone should know, and why early detection can make a life-saving difference.
Early screening can help identify risk sooner, providing individuals and loved ones with more time, awareness, and options before crisis strikes.
Type 1 diabetes can become life-threatening before families even realize what’s happening. Many people are diagnosed during diabetic ketoacidosis (DKA), a serious and potentially life-threatening medical emergency.
Early screening can help identify risk sooner — providing families with more time, awareness, and options before crisis strikes.
Early Screening for Type 1 Diabetes Saves Lives
Why SCREEN for Type 1 Diabetes (T1D)?
Anyone can develop autoimmune type 1 diabetes (T1D), no matter their age, family history, or lifestyle choices. But if just 1 family member has T1D, your risk multiplies by up to 15X.
Screening for Type 1 Diabetes can detect the condition before any symptoms appear. Alarmingly, up to 40% of people are unaware they have T1D until a severe, life-threatening event necessitates hospitalization. Don't wait. Screening can benefit you or a loved one by providing early awareness and options for management.
Understanding the Signs
Early screening is vital for catching Type 1 Diabetes before severe symptoms appear.
Get Ahead of Early Detection
Discover the crucial tests that can identify Type 1 Diabetes early and accurately.
How to Screen
Type 1 Diabetes tests are available at medical clinics and endocrinologist offices.
What the Results Mean
Better understand what the screening test will identify.
Advocating for Early Screening: Our USPSTF Nomination
Touched by Type 1 has submitted an official topic nomination to the U.S. Preventive Services Task Force (USPSTF), urging them to recommend routine screening for the early detection of Type 1 Diabetes in children.
Understanding the Signs of Type 1 Diabetes
Recognizing the early symptoms of Type 1 Diabetes in yourself or a loved one can make a significant difference. Early detection can help you anticipate what’s to come and reduce the risk of serious complications, such as diabetic ketoacidosis (DKA), with proper medical guidance. Stay informed and proactive.
Early Signs of Type 1 Diabetes:
Extreme fatigue
Unexplained weight loss
Blurry vision
Feeling very thirsty
Frequent urination
Nausea and vomiting
Get Ahead of Early Detection
Early-stage Type 1 Diabetes diagnosis allows you and your loved ones to plan effectively. Managing Type 1 Diabetes involves new responsibilities and a learning curve.
By staying ahead of insulin dependence, you can:
Acquire essential skills for T1D management
Stay informed about treatment and management options from your doctor
Connect with the right care team and supportive T1D community
Prepare now to navigate the journey with confidence.
There are many low or no-cost options available. Consult your doctor to find the best choice for you or your loved ones.
How to Screen?
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Schedule an appointment for a test at a doctor's office or inquire about testing at participating labs like Labcorp® or Quest Diagnostics®. The cost of these tests will vary based on your insurance coverage.
Alternatively, you can discuss with your doctor about receiving a test kit directly at home from certain laboratories such as Enable Biosciences. The kit includes detailed instructions for drawing a blood sample from your fingertip and may be a more affordable option, with potential financial assistance available.
If the test result is positive, follow up with your doctor to confirm the results through a lab test. -
Ensure your health or that of a loved one by opting for early Type 1 diabetes screening. Screening Central provides comprehensive telehealth services to assist you through every phase of the screening process.
One-on-One Consultation: Speak directly with a diabetes counselor to address any general inquiries about Type 1 Diabetes and guide you on how to begin your screening journey. Call toll-free at 855-576-8471, Monday to Friday, 9 AM - 8 PM EST, excluding holidays.
Professional Evaluation: Connect with experienced health professionals who can assess your need for screening. If suitable, they can either order a screening at a nearby lab or send a collection kit to your home.
Result Consultation: Once your results are in, receive a phone call or telehealth visit to discuss the findings, including educational information and next steps. You can also choose to have the results sent directly to your doctor.
Get started with a screening consultation today!
*The diabetes counselor can assist with your initial administrative questions about the Screening Central platform but does not provide health services. -
If you have a relative with Type 1 Diabetes, TrialNet can send you a test kit for home use or at a participating lab. Visit TrialNet for more details.
Autoimmunity Screening for Kids (ASK) offers free autoantibody tests for all children in the U.S. Visit ASK for more information.
*Based on your results, you could qualify for a clinical trial or continued monitoring.
What do the Results Mean?
This screening test detects diabetes-related autoantibodies — proteins that emerge in the blood when Type 1 Diabetes starts, even before symptoms appear. Here's what your results could indicate:
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If no autoantibodies are detected, consult with your doctor about annual rescreening until age 18, especially if you have a family history of Type 1 Diabetes.
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Finding one autoantibody means a higher risk for developing Type 1 Diabetes. Discuss with your doctor the possibility of testing for all five T1D autoantibodies and consider annual rescreening to monitor for additional autoantibodies.
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Detection of two or more autoantibodies suggests the early stages of Type 1 Diabetes may have begun. Speak to your doctor about available options and next steps to proactively manage your health.
Driving Change Through Early Screening: Our USPSTF Advocacy
Each year, thousands of children are diagnosed with Type 1 Diabetes—often with no prior warning. More than 85% of these children have no family history of the disease. Nearly half are diagnosed in life-threatening diabetic ketoacidosis (DKA), a condition that can cause coma or death if left untreated.
Early screening can change that outcome.
Through a simple, FDA-authorized blood test, Type 1 Diabetes can be detected in its earliest stages—before symptoms begin. When caught early, families have time to prepare, physicians can monitor the child’s progression, and emerging treatments can delay the clinical onset of T1D.
What a USPSTF Recommendation Would Do:
A formal recommendation from the U.S. Preventive Services Task Force would:
Make screening accessible by requiring insurance coverage for T1D testing
Reduce emergency diagnoses by lowering DKA rates from as high as 60% to as low as 2.5%
Promote health equity by screening all children, not just those with a family history
Support families with early education, monitoring, and treatment options.
Why Early Detection Matters
Type 1 Diabetes is one of the fastest-growing chronic diseases in children. Current guidelines limit screening to first-degree relatives—but 85% of new cases occur in children without any family history.
This leaves most families unprepared for the realities of a lifelong diagnosis. Children in underserved communities are especially at risk, with the highest increases in new diagnoses and the greatest barriers to care.
Early screening offers a path forward. It helps prevent traumatic hospitalizations, improves long-term health outcomes, and allows families to take action before crisis strikes.
Our Commitment to Families
At Touched by Type 1, we serve thousands of families living with Type 1 Diabetes. For many, the diagnosis began in an emergency room or intensive care unit. We believe early detection is a vital step in changing that experience.
Our mission is rooted in education, support, and empowerment—and advocating for early screening is a natural extension of that work.
We are proud to stand alongside other advocates, researchers, and organizations in calling for the USPSTF to make Type 1 Diabetes screening a national standard.
Explore the full application Touched by Type 1 submitted to the U.S. Preventive Services Task here.