LEARN MORE: All About Screening for Type 1 Diabetes

Thanks to decades of research, you can now detect the earliest stages of type 1 diabetes (T1D) months or years before needing daily insulin therapy. Getting screened is a simple blood test, but many people with T1D haven’t learned why screening family members is so important! 

A few things you need to know about screening for T1D

  • The T1D attack on your body’s insulin-producing cells can start years before you develop high blood sugar and noticeable symptoms. That attack results in autoantibodies that can be detected in your blood. 
  • If you catch T1D in the earliest stages, there is an FDA-approved therapy (and many others in clinical trials) that can delay the full onset of the disease for potentially years — which means delaying the need for daily insulin therapy, too. 
  • Anyone can (and should) get screened at any age: your children, nephews, cousins, nieces, sisters, brothers, etc. T1D can develop at any age.
  • More than half of T1D cases develop in adulthood! This means even your adult family members should consider getting tested. (More and more adults are misdiagnosed with type 2 diabetes because of the common misconception that T1D only starts in childhood.) 
  • Catching T1D early also means preventing diabetic ketoacidosis (DKA), which is life-threatening and can permanently damage the brain. 
  • 85 to 90% of people diagnosed with T1D have no family history of the disease! This means anyone and everyone should consider getting screened. 

What are your thoughts about encouraging family members for the earliest stages of T1D? We asked, and our community shared. 

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? 

Let’s check out some of their insightful comments:  

  • As a T1D, if I had children, I’d have them screened, but I have none because when I was child-bearing age (20+ years ago), it felt too dangerous. My brother and sister (in their 50s and healthy) don’t seem interested and are presumably safe from T1D at this point.” (EDITOR’s NOTE: More than 50% of T1D cases are diagnosed in adulthood! It’s still worth getting screened!)
  • In my immediate family, both my son and I are T1Ds. After my son was diagnosed, his older sister was tested for the autoantibodies, but she didn’t have them. My husband has never been tested, and neither have my siblings. I have a sister who was diagnosed as type 2.” (EDITOR’s NOTE: Many adults are being misdiagnosed with T2D because of common misconceptions that T1D only develops in childhood. Get tested for autoantibodies to be sure you’ve got the right diagnosis.)
  • I answered that nobody wants to be screened, but I was answering based on my immediate family. I let my deceased type 1 diabetic cousin’s 35-year-old son know he can be tested for his likelihood of becoming type 1 diabetic. He said he may be tested as he was always curious if he had a chance.” 
  • “I was genetically screened and found to have monogenic type 1 diabetes. Not caused by the immune system, but a gene defect. So does my eldest of three sons and his eldest of two daughters.” 
  • “My daughter and my three grandchildren, who are now in their 20s, have no interest in being screened. I asked them when screening first became available and have repeated my request as my grandchildren grew into their teens. They refuse.” 
  • “I have T1D, so when one of my grandkids became a T1D, the other three got screened. The brother of the one with T1D showed a likelihood of getting T1D. Unfortunately, that test was accurate. Now my son has two T1D sons.”  (EDITOR’S NOTE: A “likelihood” of T1D means this child tested positive for autoantibodies and was in the earliest stages of developing T1D.)
  • “My husband, most of my children, and I all have diabetes. 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 tested my other children before but only to aid research. I am happy that there are drugs that can delay the onset of T1D for anyone with antibodies.” 
  • I strongly advocate for annual/biannual tests to test for antibodies measuring the destruction of insulin-producing cells. If we can accurately and reliably measure injury, then we should use it to assess how our environment contributes to the development of pancreatic injury (and by the environment, I mean diet, drugs, vaccines, alcohol, exercise, etc.).” 
  • “I was tested as an adult. I shared the information with my family, because they are adults they will make up their own minds.” (EDITOR’S NOTE: More than half of T1D cases are diagnosed in adulthood! Don’t assume you’re in the clear simply because you’ve grown up.)
  • “Getting them tested decades ago seemed like the right, responsible thing to do. All three of my children are in their fifties now, and I’m grateful for all those years of not having to worry so much! And now, there’s even more reason to get the testing done. Baby steps, if you’re still waiting for a cure, but at least they’re in the right direction!” 
  • “Heck yea! If screening shows 1, some or all five autoantibodies and there is a drug to prevent/delay type 1 onset, why not?”