Clinical Trial Education Volunteer Meredith shares more about her family’s experience with screening after her son was diagnosed with T1D.
Hi, I’m Meredith and I’m one of JDRF’s Clinical Trial Education Volunteers. I live in Colorado and support the Mountain West Chapter.
Like so many families, when my son Peter was diagnosed in 2014, we missed many of the warning signs and had a very scary experience with DKA (diabetic ketoacidosis). A new diagnosis of type 1 diabetes (T1D) in the family often leads to many questions about risk for other family members and how to screen parents and siblings for the autoantibodies that can predict a future diagnosis. Some families would prefer not to know and would rather keep an eye out for symptoms, but there are many benefits to screening including reduced risk of diagnosis in DKA and the opportunity to participate in early intervention treatment studies. It’s important to discuss the benefits with your endocrinologist.
Because of the increased risk for siblings to develop T1D, we decided to screen ourselves and our younger three children for type 1. Initially we all participated in TrialNet, but have also participated in the ASK study here in Colorado. Fortunately, none of our other children have been diagnosed with T1D, but screening led to a diagnosis of Celiac disease for our younger daughter and allowed us to track our youngest son at risk for Celiac due to positive antibodies. Early diagnosis helped to avoid further health complications in our daughter.
Thanks to the work of JDRF-funded research, we have a solution to prevent DKA from ever happening to another family: global universal screening. If you are interested in participating in screening, the ASK study or at-home screening are two easy programs to assess your risk for T1D:
- If you live anywhere in the US and would prefer to do a test at home to screen for your risk of T1D, Enable Biosciences has an at-home test kit that uses a small amount of blood from your fingertip. The test is available for $55, but there is an option to receive the kit at a reduced price if you have financial need. For more information, please visit jdrf.org/t1detect.
- If you live in Colorado, ASK (Autoimmunity Screening for Kids) provides free screening for both T1D and Celiac disease for Colorado children and their parents, no family history of the diseases is required to participate. Screening is available at sites around Colorado and involves a simple blood draw. For more information, please visit askhealth.org.
If you received positive results from either program, it is important to follow up with your doctor to receive confirmation of your results. Knowledge is power and although positive results may be upsetting, this knowledge can help to avoid serious complications and life-threatening conditions in the future and create a pathway for you to take action via other clinical trials today.
In the past decade, JDRF has invested more than $66 million in screening research … incredible! Our collective goal is that one day, T1D will be like polio or measles, and we will only read about it in our vaccination records. But their work isn’t just centered around screening, it’s also focusing on developing drugs that change the course of T1D for everyone at risk for developing the autoimmune disease. That means slowing or halting the progression of the disease, preventing it from ever occurring, and reversing it entirely. You can read more about these goals and progress here: jdrf.org/disease-modifying-therapies/.
Have more questions about screening or T1D research in general? Reach out to your JDRF Staff Partner Hannah at firstname.lastname@example.org or 720-413-1523.