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.<\/p>\n

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 \u2014 one that didn\u2019t fit neatly on either pamphlet.<\/p>\n

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<\/a>, an endocrinologist at the Joslin Diabetes Center in Boston.<\/p>\n

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 \u2014 which can be confirmed through blood tests \u2014 they described being denied the medicines, technology, and tests to properly treat their diabetes. Three of them wonder if their race played a role.<\/p>\n

Phyllisa Deroze first asked to have her blood tested for antibodies associated with Type 1 diabetes six years after being diagnosed with Type 2 diabetes. Two years later, after two endocrinologists denied her requests, she persuaded her gynecologist to run a test. The results came back positive, showing she indeed had diabetes, but not Type 2.(Kathryn Pitts)<\/span><\/figcaption><\/figure>\n
\u201cThat does seem to happen more frequently for African American patients and for other minoritized groups,\u201d said Rochelle Naylor<\/a>, a pediatric endocrinologist at the University of Chicago who researches atypical forms of diabetes. \u201cDoctors, like any other person walking this planet, we all have implicit biases that impact our patient experiences and our patient care delivery.\u201d<\/p>\n
Black patients have long struggled with bias across the U.S. health care system. In a recent KFF survey<\/a>, 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<\/a>. Even a common test used to manage diabetes can underestimate blood sugar levels<\/a> for patients who have sickle cell trait, which is present in nearly 1 in 10 African Americans.<\/p>\n
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<\/a>, an endocrinologist who leads the adult Type 1 diabetes program at Ohio State University.<\/p>\n
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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.<\/p>\n
LADA is more akin to, or even thought to be another form of, Type 1 diabetes, an autoimmune condition once dubbed \u201cjuvenile diabetes\u201d because it was most often diagnosed in children. Type 1 occurs when the body attacks its cells that produce insulin \u2014 the naturally occurring hormone that regulates blood sugar by helping turn food into energy. Without insulin, humans can\u2019t survive.<\/p>\n
LADA is difficult to diagnose because it progresses slowly, Gaglia said. Typical LADA patients are over 30 and don\u2019t 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.<\/p>\n
\u201cIf you have someone who comes into your office who is obese and\/or overweight and may have a family history of Type 2 diabetes \u2014 if you\u2019re a betting person, you bet on them having Type 2 diabetes,\u201d Gaglia said. \u201cBut that\u2019s the thing with LADA: It unmasks itself over time.\u201d<\/p>\n
$\"Mila$
\u201cIn the health care system, it\u2019s really hard to vocalize your needs when you are a woman of color because you come off as aggressive, or you come off as a know-it-all, or you come off as disrespectful,\u201d Mila Clarke says. \u201cMy intuition was right this whole time, but nobody believed me.\u201d (Brandon Thibodeaux for KFF Health News)<\/span><\/figcaption><\/figure>\n
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.<\/p>\n
\u201c\u2018What you just explained to me, I believe, is a classic case of LADA,\u2019\u201d Clarke recalled being told. \u201c\u2018Has anybody ever tested you for Type 1 antibodies?\u2019\u201d<\/p>\n
Because both Type 1 diabetes and LADA are autoimmune conditions, patients will have antibodies that Type 2 patients typically don\u2019t. But, as Clarke recounted, getting tested for those various antibodies isn\u2019t always easy.<\/p>\n
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 \u201c Hangry Woman<\/a>,\u201d and garnered tens of thousands of followers on Instagram<\/a>. Clarke said she wanted to fight the stigma around Type 2 diabetes, which stereotypes often associate with being overweight.<\/p>\n
\u201cSome of the harshest comments that I had gotten were from people with Type 1 who were like, \u2018We\u2019re not the same. I didn\u2019t cause this. I didn\u2019t do this to myself,\u2019\u201d Clarke said. \u201cWell, neither did I.\u201d<\/p>\n
Clarke also felt her initial doctor thought she just wasn\u2019t working hard enough.<\/p>\n
When she learned about continuous glucose monitors, wearable electronic devices that allow patients to track their blood sugar around the clock, she asked her primary care doctor to prescribe one. The monitors are recommended for patients with Type 1 and, more recently, some with Type 2. \u201cHe flat-out told me, \u2018No. It\u2019s going to be too much information, too much data for you,\u2019\u201d she recalled.<\/p>\n
Clarke switched to a different primary care doctor who she felt listened better and who prescribed a continuous glucose monitor. (Clarke later became a paid ambassador for the company that manufactures her device.) The new doctor eventually referred Clarke to the endocrinologist who asked if she\u2019d been tested for antibodies. The test came back positive. Clarke had LADA.<\/p>\n
\u201cIn the health care system, it\u2019s really hard to vocalize your needs when you are a woman of color because you come off as aggressive, or you come off as a know-it-all, or you come off as disrespectful,\u201d Clarke said. \u201cMy intuition was right this whole time, but nobody believed me.\u201d<\/p>\n
$\"Mila$
Mila Clarke inserts a syringe into a vial of insulin, which she uses to treat her diabetes.(Brandon Thibodeaux for KFF Health News)<\/span><\/figcaption><\/figure>\n
Immediately, Clarke noticed an \u201ceye-opening\u201d difference in how she was treated. She started insulin injections and was referred to a dietitian and a diabetes educator. She wondered: Why wasn\u2019t it easier to get tested for antibodies?<\/p>\n
Those tests are imperfect and can have false positives, said Gaglia of the Joslin center. Still, Ohio State\u2019s Wyne argued that every diabetes patient should be tested for at least the most common antibody<\/a> associated with Type 1.<\/p>\n
\u201cAren\u2019t you saving lives if you\u2019re identifying the Type 1 before they come in with DKA and die?\u201d Wyne asked, referring to diabetic ketoacidosis, a serious complication of diabetes most commonly associated with Type 1.<\/p>\n
Deroze started asking her doctor for antibodies tests in 2017 after reading about a Type 2 blogger\u2019s experience<\/a> being newly diagnosed with LADA.<\/p>\n
Her endocrinologist denied her requests. She thinks the doctor thought it was impossible for her to have an autoimmune form of diabetes because of her race and weight. She sought a second opinion from a different endocrinologist, who also refused to test her.<\/p>\n
\u201cI just felt unseen,\u201d Deroze said.<\/p>\n
After a bout with diabetic ketoacidosis in 2019, Deroze finally persuaded her gynecologist to test her for antibodies. The results came back positive. One of the endocrinologists apologetically prescribed insulin and, later, an insulin pump, another ubiquitous piece of technology for people with Type 1.<\/p>\n
And for the first time, she encountered the words \u201cdiabetes is not your fault\u201d while reading about Type 1 diabetes. It felt like society was caring for her in a way it hadn\u2019t when she was misdiagnosed with Type 2. That\u2019s troubling, she said, and so is how long it took to get what she needed.<\/p>\n
\u201cMy PhD didn\u2019t save me,\u201d said Deroze, who now lives in the Miami area. \u201cYou just see the color of my skin, the size of my body, and it negates all of that.\u201d<\/p>\n
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