Although type 1 diabetes, also known as juvenile diabetes, can be a burdensome condition, it can be managed. Children with diabetes that is well-managed can enjoy full, active lives. 

Juvenile diabetes is a chronic autoimmune disease in which the body’s immune system targets and destroys the insulin-producing beta cells in the pancreas. Insulin is needed to move sugar, or glucose, into the body’s cells, which use it for energy.

“Diabetes is an extremely serious condition, and even if people are taking their medications, they are still at risk for long-term complications,” says Stuart A. Weinzimer, MD, a Yale Medicine pediatric endocrinologist. “Even so, we have a lot of really wonderful tools that make it possible for people to get their blood sugars into target, and if you can achieve that, you really can have a very long and healthy life.”

In fact, Yale Medicine Pediatric Endocrinology & Diabetes has been a pioneer in the study and use of automated insulin-delivery systems that are revolutionizing the field of type 1 diabetes care. 

While both forms of diabetes, type 1 and type 2, are based on genetics, the underlying causes of type 1 diabetes are believed to be very different than type 2 diabetes, the more common form.

In a patient with type 1 diabetes, the body produces insulin, but it doesn’t use it efficiently, so the pancreas needs to make more. Eventually the pancreas can’t keep up, which leads to diabetes. Type 2 diabetes may often be prevented or delayed in its onset by keeping one’s body weight in range, improving diet, and exercising more. This is different than type 1 diabetes; in type 1, the body destroys its own insulin-producing cells in the pancreas, leading to an absolute lack of insulin.

“While you may be born with the propensity to develop diabetes, you don’t necessarily develop diabetes if you have the genetic risk,” says Dr. Weinzimer. “Not everybody with these genes develops diabetes.” In those with these “at-risk” genes, there is some additional trigger that starts the immune system attack on the pancreas in type 1 diabetes. Doctors think that it could be common viruses or other infections that turn on the immune system to destroy the beta cells.

Despite the name, “juvenile” diabetes does not only develop in children. It most commonly affects children in their preteen and teen years, but people are at risk until their early 40s. About 30 percent of the time, it’s diagnosed in young adulthood, after the teenage years.

The condition is equally common in women and men, and can affect a person of any race or ethnicity, though it is more common in Caucasians.

Unlike type 2 diabetes, which a person at any stage of life can develop, type 1 diabetes is never initiated by lifestyle. A person who is genetically inclined to develop type 1 diabetes can’t, for example, eat well and exercise in order to prevent it.

“Unfortunately, we don’t have ways of preventing the onset of type 1 diabetes in those people we’ve identified as being prone to developing it,” Dr. Weinzimer says. “There are a lot of research trials, many being done here by doctors at Yale Medicine, but that’s not standard of care yet.”

Without insulin to transport glucose to the body’s cells, the glucose builds up in the blood, causing high blood sugar levels.

That extra sugar in the blood causes other symptoms that can develop as quickly as within a few days or weeks. Those include: excessive thirst, excessive urination (which may mean bedwetting for a child who had already outgrown it), an increased appetite, and even weight loss, fatigue, and blurred vision.

“People have poor energy, a general feeling of illness, and then ultimately a problem in which the body starts to break down protein and fat in order to provide more fuel for the body,” Dr. Weinzimer says.

Elevated blood sugar levels can be measured with a blood test. The next step is to determine whether it’s type 1 or type 2 diabetes, because they require different approaches to treatment. A person with type 2 diabetes may often be treated with dietary changes or a variety of medications, such as a pill or injection, instead of—or in addition to—insulin. Type 1 diabetes is universally treated with insulin.

To find out which type it is, doctors may test levels of certain antibodies that are elevated in the blood. Sometimes it is helpful to measure the protein C-peptide in the blood, which can show how much insulin the body is producing. Low levels of C-peptide can indicate type 1.

“There are three cornerstones of treatment,” says Dr. Weinzimer. “Insulin is very important, but hand in hand with that is learning to monitor blood sugar levels with a personal glucose meter, and checking those levels regularly. Then the third is nutrition—to understand how much sugar is in everything you’re eating so you can dose yourself properly with insulin.”

Type 1 diabetes will require lifelong treatment with insulin, given either by injection or an insulin pump. The pump is small, around the size of a beeper, and connects with very small tubing to a catheter inserted under the skin, where the insulin is delivered continuously. 

Additional doses of insulin may be given throughout the day whenever needed by pressing buttons on the pump. The pumps also help users calculate their own doses of insulin. Some pumps do not use tubing, and are instead worn directly on the body and operated by a remote control.

Monitoring blood sugar levels requires a self-checked blood test, using a device that pricks the finger, several times a day. The result can determine the level of insulin required, and can help a person better understand and regulate his or her dietary needs.

Paying attention to carbohydrate (a more general term for sugar) intake is important. “You just have to learn how much carbohydrate is in all the things you eat,” Dr. Weinzimer says. “You have to be somewhat judicious and be able to plan for these things, but with planning you can accommodate them.” Accommodating carbohydrate intake means adjusting your insulin needs for the day.

Ongoing care by a patient’s doctor will include a regular A1c blood test—usually done every three months—which reveals more long-term data about blood sugar levels.

Because glucose serves an essential function throughout the body, diabetes can cause severe long-term complications, particularly if insulin and overall health are not well managed.

“These problems happen extremely slowly,” says Dr. Weinzimer. “And, though not a guarantee, a lot of risk of long-term health problems is related to how well you can control your blood sugar.”

Complications can arise in as few as 10 years after diagnosis, if the patient does not control blood sugar levels. But those patients who diligently and successfully manage the condition can have type 1 diabetes for many decades without any dire long-term effects.

Diabetic complications can occur in various organs:

• Kidneys: Blood vessels in the kidneys filter waste in the blood, and when there’s extra glucose in that blood, it can break down those vessels, leading to potential kidney failure.
• Eyes: Too much sugar in the blood can damage vessels in the back of the eye, leading to diabetic retinopathy, which can cause clouded vision and even blindness
• Heart: High blood sugar levels can also damage larger blood vessels, such as the coronary artery, which can lead to peripheral arterial disease, heart attacks and strokes.
• Nerves: Diabetes can cause damage to peripheral nerves, leading to a loss of sensation, most commonly in the feet and toes.

Yale Medicine’s childhood Diabetes Program is one of the few places in the world that is studying the use of automated systems for delivery of insulin. Called the artificial pancreas (although not actually a pancreas that has to be surgically implanted), it’s a system of devices—namely an insulin pump and a continuous glucose sensor—that work together to automate insulin delivery, so it’s less burdensome and intrusive for patients.

The artificial pancreas was approved by the FDA in 2015. 

Also in development are advanced systems that are specifically designed for young children, who at Yale Medicine are treated with a holistic approach that involves a team of dedicated professionals in several fields. That clinical mission, supported by the Yale Center for Clinical Investigation, is why Yale Medicine constantly ranks in the top nationally among hospitals for type 1 diabetes care.

“Not only do we treat patients, but we’re on the cutting edge of research that will change the way we manage diabetes,” Dr. Weinzimer says. “What we’ve learned from our studies already is that these things remove a lot of the burden and worry from people and improve their quality of life.”