The Diabetes Spectrum: Understanding unusual diabetes

Reporter: Amy Oshier Writer: Derrick Shaw
Published: Updated:
FILE – In this April 18, 2017 file photo, a woman with Type 2 diabetes prepares to inject herself with insulin at her home in Las Vegas. Overweight or obese Americans should start getting screened for diabetes and prediabetes earlier, at age 35 instead of 40, according to national guidelines updated on Tuesday, Aug. 24, 2021. (AP Photo/John Locher)

November is Diabetes Awareness Month.

Are you aware there are more types of diabetes than just type one and type two?

Type one is often diagnosed in children who are left dealing with a lifetime of insulin injections.

Meanwhile, adults are diagnosed with type two diabetes and are treated with medications and injections. But thousands of people don’t fall into either category and are diagnosed with unusual forms of hard-to-treat diabetes. Now researchers are hoping a nationwide clinical trial will help them find new treatments.

Sixteen-year-old Raquel Gebel doesn’t let anything slow her down. Doing all this, while losing her eyesight.

“I can tell there’s a wall there, but if I just didn’t hear, I didn’t know anyone was in the room, I wouldn’t be able to tell you guys, you’re sitting there,” explained Raquel.

Diagnosed as a five-year-old with Wolfram Syndrome, Raquel, with her mom by her side, has joined clinical trial after clinical trial in hopes of finding a way to stop this disease.

“As a parent, you’re sitting there going, what do you do with your child who can’t see and can’t hear?” shared Stephanie Snow Gebel, Raquel’s Mom.

Wolfram Syndrome is often misdiagnosed as type one diabetes in children. Children experience the same blood sugar problems but unlike type one diabetes.

“Most cases are caused by a change in the single gene,” said Fumihiko Urano, MD, Ph.D., Professor of Medicine with Washington University School of Medicine.

Now there is a new nationwide clinical trial, Radiant, which is enrolling thousands of people who fall on the diabetes spectrum. Researchers hope to build a comprehensive database of genetic and clinical data, allowing doctors across the world to more easily identify atypical forms of diabetes and identify new genes associated with rare forms of the disease.

“We may be able to design a personalized treatment for each patient with diabetes,” continued Dr. Urano.

The ultimate goal, improve and save the lives of people, like Raquel, living with an unusual form of diabetes.

“I truly believe soon I’ll be able to see again. There’ll be a cure,” said Raquel.

Right now, there is no cure for Wolfram Syndrome, just medications to treat the symptoms. Most patients die by the age of 40 unless their medical condition is managed very well.

That’s why the Radiant trial is so important. Nationwide, the study is being held at the University of South Florida in Tampa, Baylor College of Medicine in Houston, the University of Chicago, and Massachusetts General Hospital in Boston.

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