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When Usher’s child was diagnosed with type 1 diabetes (T1D) at the age of 6, it was a shock for his entire family, the singer says. No one in their family had been diagnosed with type 1 diabetes before and the fear of the unknown was overwhelming.

“Life would be different and it would change after that day,” the Grammy Award winner tells Parents. “This wasn’t something that could easily be remedied—it was a lifestyle; it was a life change.”

The diagnosis forced his young child to become more responsible than one is typically prepared to be at that age. “You would never think that a 6-year-old would have to all of a sudden be conscious of what they ate,” Usher explains. “Those are the last things that you’re thinking about when you’re that age, and then the idea that normalcy has changed in comparison to other children that my child would be around.”

The child’s health and blood sugar levels became a constant worry for the dad of four. “If my child ever wanted to go on a trip or do the normal things that kids do to be social, I’m always thinking about it,” says Usher. “It’s always lingering in the back of my mind.”

This is the reality for a rising number of American families. Type 1 diabetes, an autoimmune condition where the pancreas makes little or no insulin leading to high blood sugar levels, is often first diagnosed in childhood. This differs from type 2 diabetes, which is most often diagnosed in people 45 and older. The Centers for Disease Control and Prevention (CDC) estimates the prevalence of type 1 diabetes may increase by as much as 65% in the next four decades.1

It’s not totally clear what’s causing this increase, but according to Graeme R. Frank, MD, a pediatric endocrinologist with Northwell Health, one prevalent theory involves the hygiene hypothesis—the idea that cleaner environments are negatively impacting the immune system.

What’s understood, though, is the impact the disease can have on families. A new study from Beyond Type 1, a diabetes advocacy organization, shows 83% of caregivers that have kids with type 1 diabetes made lifestyle changes after learning of the diagnosis.2 They say they felt overwhelmed and unprepared.

But early detection can make a big difference for families. A majority of those in the study with type 1 diabetes say early detection could have helped them feel more in control, have more time to prepare, and possibly avoid the stress of “not knowing.”

Early detection may have also prevented the financial burden that can come as a result of a surprise diagnosis. The study finds half of those with type 1 diabetes spent at least $5,000 in emergency care for their symptoms.2

The positive news, according to Dr. Frank, who is not affiliated with Beyond Type 1 or the study, is there have been many advancements in type 1 diabetes treatment.

“It’s completely different to what it was in the past. It’s a completely manageable condition,” says Dr. Frank. “We’ve got amazing technology that kids can live long, healthy lives, and do great.”

This wasn’t something that could easily be remedied—it was a lifestyle; it was a life change.

— USHER ON HIS CHILD’S DIAGNOSISWhy Early Diagnosis Matters

Understanding risk factors, symptoms, and the ability to screen early can prevent life-threatening issues. If type 1 diabetes isn’t diagnosed, it can lead to ketoacidosis, a serious complication where acid builds up in the blood and can become fatal.3

“The reality is that actually about 20-40% of patients still today, present with new onset diabetes in ketoacidosis—that number should be zero,” says Dr. Frank. “If families knew the symptoms, then they would go to the doctor as soon as they see this change.”

Research shows disparities in treatment as Black children have higher rates of ketoacidosis.4 There is also a racial inequity in type 1 diabetes technology use.5

“What needs to change is awareness and empowering our communities to have the knowledge that they need so that they can advocate for themselves with their doctors,” says Kristian Hurley, Senior Vice President of Programs, Advocacy, & Health Equity at Beyond Type 1. “And they can ask to be screened so that they can begin to improve their outcomes if needed.”

It’s especially important as type 1 diabetes can be missed in a health care visit. Dr. Frank says ideally health care providers would always be asking about symptoms, but that is not always the case. “We’ve seen that as many as 20% of the kids who present in ketoacidosis have seen their doctors within two to three days prior, for some other complaint, and that the fact that they had diabetes wasn’t elicited,” he says.

Certain factors can put children at higher risk for type 1 diabetes, such as having a first-degree relative with the disease, having had certain viruses, including enteroviruses, or living in the northern latitudes, further away from the equator, which can impact vitamin D intake. Vitamin D may be a protective factor against type 1 diabetes, as well as other conditions.67

Beyond Type 1 advocates for families to know their risks and seek out screenings, including an autoantibody screening.

“Should you learn that you do have markers for autoimmune for type 1 diabetes, what we see is that people are more prepared, they can take that time to learn about type 1, they can talk with their doctor, and start to put together a plan,” says Hurley. “We know that those families and those individuals have better outcomes; they have much fewer diabetes complications.”

In fact, the Beyond Type 1 study found 68% of adults with type 1 diabetes regret not taking an autoantibody test early to understand their risk. And 72% didn’t know they could be screened.2

There are three stages of type 1 diabetes and an autoantibody test can detect which stage a person is in. The Food and Drug Administration (FDA) has also recently approved an injection treatment that can delay the onset of stage 3 type 1 diabetes for those 8 years and older who have stage 2.8

But, what’s most important is identifying the symptoms of type 1 diabetes so that families can catch it before it progresses.

What needs to change is awareness and empowering our communities to have the knowledge that they need so that they can advocate for themselves with their doctors.

— KRISTIAN HURLEY OF BEYOND TYPE 1Type 1 Diabetes Symptoms To Know

The main symptoms of type 1 diabetes are the same no matter your age.9

• Increased thirst
• Increased urination
• Weight loss
• Fatigue

It mostly shows up via noticeable changes in behavior patterns. For example, a child may suddenly start bedwetting or waking up multiple times a night to pee and/or drink water, which they’ve never done before.

In the United Kingdom, there is a public awareness campaign that lists symptoms as the Four Ts—thirst, toilet, tired, thinner.

To break it down, without insulin, blood glucose, or blood sugar, rises. Since the kidneys can’t filter the high amounts, it gets excreted through the urine. Fluids are also simultaneously released, which leads to thirst.

“If people are drinking or peeing more than usual, they should be checked by the pediatrician,” says Dr. Frank. “Those are symptoms of diabetes that occur in every single person.”

Health care providers can check for type 1 diabetes by looking for sugar in the urine or with a blood test. Type 1 diabetes is treated with insulin given by injection or insulin pump.

“Families have to learn how to test the blood sugar, how to give insulin, how to calculate doses that they need,” shares Dr. Frank. “So, there’s a lot that goes into it.”

If people are drinking or peeing more than usual, they should be checked by the pediatrician. Those are symptoms of diabetes that occur in every single person.

— GRAEME R. FRANK, MDFamily Life After a Type 1 Diabetes Diagnosis

Life undeniably changes for a family when one of its members is diagnosed with type 1 diabetes. “It, of course, affects that individual, but it really does impact everyone in the household,” says Hurley. “It has a social and emotional component that is daily.”

Research suggests that a type 1 diabetes diagnosis can bring about feelings of shame and embarrassment.10 Usher hopes his efforts to raise awareness about the disease can help to combat any negative feelings families may have.

He plans to meet with legislators in Washington, D.C. to advocate for federal funding. “I want to be able to take that veil down. I’m hoping that by sharing my story, and sharing my experiences, it normalizes the ability to talk about these things, and brings attention to something that needs support and funding.”

But there is comforting news. Dr. Frank points out that technological advancements in diabetes treatment, including insulin pumps, have made living with the disease much easier.

There are also resources available. “Most pediatric diabetes clinics have excellent after hours resources to help manage in the moment,” says Christina Johns, MD, MEd, FAAP, Pediatric Emergency Physician + Senior Medical Advisor at PM Pediatric Care.

Support groups, such as through the American Diabetes Association and Breakthrough T1D, can be valuable, too. “It’s a nice way to stay abreast of all the latest research in this area and to get support and smart tips from others in the same situation,” says Dr. Johns.

Usher says that type of support proved invaluable for his family’s journey. He says they connected with a network of people from different foundations who were living with the disease. Usher’s family also received a lot of support and guidance from his child’s endocrinologists, which, Dr. Frank says should be a part of every family’s good medical team, in addition to a nutritionist.

He also shares a positive reality: even though type 1 diabetes is a lifelong condition, children these days can still thrive and achieve their goals.

“They can live really perfectly healthy lives—it’s just they have to do a little bit more than people who don’t have diabetes,” says Dr. Frank. “But there’s essentially nothing that they can’t do.”