When Phyllisa Deroze was told she had diabetes in a Fayetteville, North Carolina, emergency department years ago, she was handed pamphlets with information on two types of the disease. One had pictures of children on it, she recalled, while the other had pictures of seniors.

Deroze, a 31-year-old English professor at the time, was confused about which images were meant to depict her. Initially, she was diagnosed with Type 2 diabetes, as shown on the pamphlet with older adults. It would be eight years before she learned she had a different form of diabetes — one that didn’t fit neatly on either pamphlet.

The condition is often called latent autoimmune diabetes of adults, or LADA for short. Patients with it can be misdiagnosed with Type 2 diabetes and spend months or years trying to manage the wrong condition. As many as 10% of patients diagnosed with Type 2 diabetes might actually have LADA, said Jason Gaglia, an endocrinologist at the Joslin Diabetes Center in Boston.

Deroze and three other LADA patients who spoke with KFF Health News, all Black women, are among those who were initially misdiagnosed. Without the correct diagnosis — which can be confirmed through blood tests — they described being denied the medicines, technology, and tests to properly treat their diabetes. Three of them wonder if their race played a role.

“That does seem to happen more frequently for African American patients and for other minoritized groups,” said Rochelle Naylor, a pediatric endocrinologist at the University of Chicago who researches atypical forms of diabetes. “Doctors, like any other person walking this planet, we all have implicit biases that impact our patient experiences and our patient care delivery.”

Black patients have long struggled with bias across the U.S. health care system. In a recent KFF survey, for example, 55% of Black adults said they believed they needed to be careful at least some of the time about their appearances to be treated fairly during medical visits. Hospital software used to treat patients has been investigated for discrimination. Even a common test used to manage diabetes can underestimate blood sugar levels for patients who have sickle cell trait, which is present in nearly 1 in 10 African Americans.

LADA ostensibly has nothing to do with race, but misconceptions about race, weight, and age can all lead doctors to misdiagnose LADA patients with Type 2 diabetes, said Kathleen Wyne, an endocrinologist who leads the adult Type 1 diabetes program at Ohio State University.

Type 2 diabetes develops in people, often over age 45, whose bodies cannot properly regulate their blood sugar levels. Type 2 accounts for at least 90% of diabetes cases in the U.S. and has a high prevalence among African Americans, Native Americans, and Hispanic populations. It can often be managed with lifestyle changes and oral medications.

LADA is more akin to, or even thought to be another form of, Type 1 diabetes, an autoimmune condition once dubbed “juvenile diabetes” because it was most often diagnosed in children. Type 1 occurs when the body attacks its cells that produce insulin — the naturally occurring hormone that regulates blood sugar by helping turn food into energy. Without insulin, humans can’t survive.

LADA is difficult to diagnose because it progresses slowly, Gaglia said. Typical LADA patients are over 30 and don’t require injectable insulin for at least six months after diagnosis. But, like Type 1 patients, most will eventually depend on injections of pharmaceutical insulin for the rest of their lives. That delay can lead physicians to believe their patients have Type 2 diabetes even as treatment becomes less effective.

“If you have someone who comes into your office who is obese and/or overweight and may have a family history of Type 2 diabetes — if you’re a betting person, you bet on them having Type 2 diabetes,” Gaglia said. “But that’s the thing with LADA: It unmasks itself over time.”

Mila Clarke, who lives in Houston, finally saw an endocrinologist in November 2020, more than four years after being diagnosed with Type 2 diabetes. During that visit, she recounted her struggles to manage her blood sugar despite taking oral medications and making significant changes to her diet and exercise regimens.

“‘What you just explained to me, I believe, is a classic case of LADA,’” Clarke recalled being told. “‘Has anybody ever tested you for Type 1 antibodies?’”

Fighting stigma around Type 2 diabetes

Because both Type 1 diabetes and LADA are autoimmune conditions, patients will have antibodies that Type 2 patients typically don’t. But, as Clarke recounted, getting tested for those various antibodies isn’t always easy.

Clarke, now 34, had leaned into her Type 2 diagnosis when she received it in 2016 at age 26. She started a blog with nutrition and lifestyle tips for people with diabetes called “Hangry Woman,” and garnered tens of thousands of followers on Instagram. Clarke said she wanted to fight the stigma around Type 2 diabetes, which stereotypes often associate with being overweight.

“Some of the harshest comments that I had gotten were from people with Type 1 who were like, ‘We’re not the same. I didn’t cause this. I didn’t do this to myself,’” Clarke said. “Well, neither did I.”