By the time many people are diagnosed with Type 1 diabetes they’ve gone to a hospital emergency room with a life-threatening condition called diabetic ketoacidosis, or DKA, said Dr. Henry Rodriguez, director the USF Center for Diabetes and Endocrinology.
According to the 2023 American Diabetes Association Standards of Care, approximately half of children and adolescents in the U.S. experience DKA at diagnosis.
Rodriguez said this situation is avoidable. He recalled an awareness campaign in a “tiny town” in Italy, to reduce the incidence of DKA.
"It was, if you see an individual that is urinating excessively, drinking excessively, and losing weight, (without trying to) think about diabetes,” Rodriguez said.
And Type 1 diabetes is not just developing in young people.
“It’s estimated that about 300,000 people in the United States have Type 1 diabetes, insulin-requiring diabetes," Rodriguez said. "The numbers are about 64,000 per year that are diagnosed. About 40%, roughly, are children or adolescents. Remarkably, 60% are adults, almost.”
There’s no national registry for Type 1 diabetes but the number of people being diagnosed is growing. And researchers don't know why.
He said that’s especially true among Hispanics, Asian Pacific Islanders and Black Americans.
Type 1 diabetes is an autoimmune disease. In Rodriguez’s words, “a failure of the immune system.”
So, the body attacks. And in Type 1 diabetes, it attacks the insulin-producing beta cells in the pancreas. Insulin is an essential hormone that unlocks energy from the food we eat and keeps blood sugar levels in check.
Rodriguez said genetics does play a role in Type 1 diabetes development, but that's not the whole story.
“I think what's particularly illustrative is if you have identical twins, and one twin has Type 1 diabetes, what do you think the risk is for that second twin that's genetically identical to also develop type 1 diabetes? Not 100%. It's actually more like 50%,” Rodriguez said.
USF partners with TrialNet to try to find people who may be likely to develop Type 1 diabetes, because they have family members who have it.
And USF researchers helped find a way to postpone the development of the condition.
“And the study that we did utilizing this drug called tuplizumab — it was FDA approved last year, it's now called Tzield — was shown to delay the development of Type 1 diabetes by roughly two years,” Rodriguez said.
He said there is no drug to fully prevent Type 1 diabetes and a cure has been elusive.
But he said he's a great believer in the multidisciplinary approach to managing the disease, which is what the Diabetes Center at USF embraces, with educators, dieticians, a clinical social worker and specialists in diabetes technologies.
"So the message, I think, is certainly one of optimism that plenty of individuals with Type 1 diabetes have led long and productive lives," Rodriguez said. "I always tell folks that I know of individuals that have really excelled in multiple areas of life."
He notes that Supreme Court Justice Sonia Sotomayor has Type 1 diabetes.
She even wrote a book about being different after a woman who saw her injecting insulin in a restaurant bathroom accused her of using drugs.
Along with finding a good care team, Rodriguez said it's important to find a sense of community.
He serves on the board of the Florida Diabetes Camp, where children can spend time with their peers, while learning to manage their diabetes.
"I think that sense of community is very important because an individual in isolation that has to deal with all the challenges... it just could seem insurmountable," Rodriguez said.
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