What Is Type 1 Diabetes?

man and his daughter smiling in a car

People of all ages can develop type 1 diabetes.

If you have type 1 diabetes, your pancreas doesn’t make insulin or makes very little insulin. Insulin is a hormone that helps blood sugar enter the cells in your body where it can be used for energy. Without insulin, blood sugar can’t get into cells and builds up in the bloodstream. High blood sugar is damaging to the body and causes many of the symptoms and complications of diabetes.

Type 1 diabetes (previously called insulin-dependent or juvenile diabetes) is usually diagnosed in children, teens, and young adults, but it can develop at any age.

Type 1 diabetes is less common than type 2—approximately 5-10% of people with diabetes have type 1. Currently, no one knows how to prevent type 1 diabetes, but it can be managed by following your doctor’s recommendations for living a healthy lifestyle, managing your blood sugar, getting regular health checkups, and getting diabetes self-management education and support.

For Parents

If your child has type 1 diabetes—especially a young child—you’ll be involved in diabetes care on a day-to-day basis, from serving healthy foods to giving insulin injections to watching for and treating hypoglycemia (low blood sugar). You’ll also need to stay in close contact with your child’s health care team; they will help you understand the treatment plan and how to help your child stay healthy.

Much of the information that follows applies to children as well as adults, and you can also visit JDRF’s T1D Resources pageexternal icon for comprehensive information about managing your child’s type 1 diabetes.

What Causes Type 1 Diabetes?

Type 1 diabetes is thought to be caused by an autoimmune reaction (the body attacks itself by mistake) that destroys the cells in the pancreas that make insulin, called beta cells. This process can go on for months or years before any symptoms appear.

Some people have certain genes (traits passed on from parent to child) that make them more likely to develop type 1 diabetes, though many won’t go on to have type 1 diabetes even if they have the genes. Being exposed to a trigger in the environment, such as a virus, is also thought to play a part in developing type 1 diabetes. Diet and lifestyle habits don’t cause type 1 diabetes.

Symptoms and Risk Factors

It can take months or years for enough beta cells to be destroyed before symptoms of type 1 diabetes are noticed. Type 1 diabetes symptoms can develop in just a few weeks or months. Once symptoms appear, they can be severe.

Some type 1 diabetes symptoms are similar to symptoms of other health conditions. Don’t guess—if you think you could have type 1 diabetes, see your doctor right away to get your blood sugar tested. Untreated diabetes can lead to very serious—even fatal—health problems.

Risk factors for type 1 diabetes are not as clear as for prediabetes and type 2 diabetes, though family history is known to play a part.

Testing for Type 1 Diabetes

A simple blood test will let you know if you have diabetes. If you’ve gotten your blood sugar tested at a health fair or pharmacy, follow up at a clinic or doctor’s office to make sure the results are accurate.

If your doctor thinks you have type 1 diabetes, your blood may also be tested for autoantibodies (substances that indicate your body is attacking itself) that are often present with type 1 diabetes but not with type 2. You may have your urine tested for ketones (produced when your body burns fat for energy), which also indicate type 1 diabetes instead of type 2.

Managing Diabetes

Unlike many health conditions, diabetes is managed mostly by you, with support from your health care team (including your primary care doctor, foot doctor, dentist, eye doctor, registered dietitian nutritionist, diabetes educator, and pharmacist), family, teachers, and other important people in your life. Managing diabetes can be challenging, but everything you do to improve your health is worth it!

If you have type 1 diabetes, you’ll need to take insulin shots (or wear an insulin pump) every day to manage your blood sugar levels and get the energy your body needs. Insulin can’t be taken as a pill because the acid in your stomach would destroy it before it could get into your bloodstream. Your doctor will work with you to figure out the most effective type and dosage of insulin for you.

You’ll also need to check your blood sugar regularly. Ask your doctor how often you should check it and what your target blood sugar levels should be. Keeping your blood sugar levels as close to target as possible will help you prevent or delay diabetes-related complications.

Stress is a part of life, but it can make managing diabetes harder, including managing your blood sugar levels and dealing with daily diabetes care. Regular physical activity, getting enough sleep, and relaxation exercises can help. Talk to your doctor and diabetes educator about these and other ways you can manage stress.

Healthy lifestyle habits are really important too:

Make regular appointments with your health care team to be sure you’re on track with your treatment plan and to get help with new ideas and strategies if needed.

Hypoglycemia and Diabetic Ketoacidosis

These 2 conditions are common complications of diabetes, and you’ll need to know how to handle them. Meet with your doctor for step-by-step instructions. You may want to bring a family member with you to the appointment so they learn the steps too.

Hypoglycemia (low blood sugar) can happen quickly and needs to be treated quickly. It’s most often caused by too much insulin, waiting too long for a meal or snack, not eating enough, or getting extra physical activity.

If you have low blood sugar several times a week, talk to your doctor to see if your treatment needs to be changed.

Diabetic ketoacidosis (DKA) is a serious complication of diabetes that can be life-threatening. DKA develops when your body doesn’t have enough insulin to allow blood sugar into your cells for use as energy. Very high blood sugar and low insulin levels lead to DKA. The two most common causes are illness and missing insulin shots. Talk with your doctor and make sure you understand how you can prevent DKA and how to treat it if needed.

Get Diabetes Education

Whether you just got diagnosed with type 1 diabetes or have had it for some time, meeting with a diabetes educator is a great way to get support and guidance, including how to:

  • Develop and stick to a healthy eating and activity plan
  • Test your blood sugar and keep a record of the results
  • Recognize the signs of high or low blood sugar and what to do about it
  • Give yourself insulin by syringe, pen, or pump
  • Monitor your feet, skin, and eyes to catch problems early
  • Buy diabetes supplies and store them properly
  • Manage stress and deal with daily diabetes care

Ask your doctor about diabetes self-management education and support services and to recommend a diabetes educator. You can also search the Association of Diabetes Care & Education Specialists’ (ADCES) nationwide directoryexternal icon for a list of programs in your community.

Get Support

Tap into online diabetes communities for encouragement, insights, and support. The American Diabetes Association’s Community pageexternal icon and the JDRF’s TypeOneNationexternal icon are great ways to connect with others who share your experience.

Making the Leap From Type 1 Teen to Adult

Young woman sitting in her apartment among moving boxes

Help teens learn how to balance their new independence with diabetes self-care.

 

Teens face lots of new challenges after they finish high school and move on to the next stage of life, including how to manage money, college, relationships, and work. And if they’re moving away from home for the first time, they’ll face those challenges with less help from parents and less structure in their day. This has even more impact for teens with diabetes.

Parents usually had the main role in diabetes care at first, especially for young children. They took their child to doctor’s appointments, picked up medicines, and provided nutritious food. They helped their child navigate school, after-school activities, birthday parties, and other social events.

It’s only natural that teens on their way to becoming adults want more independence and control. But more control over their lives can often mean less control of their diabetes. No curfew, no comments on what they’re eating, no one else setting their schedule. Diabetes care often suffers when teens and young adults begin to make complicated decisions on their own:

  • Managing day to day, from eating well to taking insulin
  • Finding health care providers
  • Scheduling and keeping appointments
  • Having supplies on hand

Young people need help to successfully balance their new independence with diabetes self-care. They’ll need to know how to deal with the practical side of diabetes: how to fill a prescription and pay for it, order supplies, contact their doctors, make health care appointments, and handle sick days. And they’ll also have the everyday problems that come with life on their own:

  • Limited time
  • Limited money
  • Irregular schedules
  • Food choices
  • Concerns about low blood sugar (hypoglycemia), which can lead to overeating
  • Less support

They may also be tired of the daily work of having diabetes and decide to ignore it. This can be very dangerous, especially when parents aren’t there to notice.

Gap in Care

Teens also need to make the leap from seeing a pediatrician to seeing an adult health care provider, usually without a clear road map for how to do so. When several changes happen at the same time, like getting new doctors and moving away from home, young people are more likely to miss appointments or drop out of care completely.

Other barriers can make it harder for teens and young adults to switch to adult health care:

  • Being unhappy about leaving their pediatrician
  • Getting a referral and contact information for a new doctor
  • Trouble getting an appointment
  • Competing life priorities
  • Having insurance problems

But good care during this time is very important. Teens and young adults with diabetes have a much higher risk of early health problems, even early death, than those without diabetes. Major causes include hypoglycemia (low blood sugar) and diabetic ketoacidosis (DKA).

Staying close to recommended blood sugar goals helps them avoid these health problems and others down the road. But as teens and young adults with diabetes transition from pediatric to adult care, the risk of not meeting those goals more than doubles.

Get Ready To Make the Leap

Help teens get prepared to manage their diabetes care successfully before they’re out on their own. Parents, teen, and pediatrician can work together to coordinate care with new doctors and create a plan to address needs over the next year or two. Parents can share practical tips, such as how to fill prescriptions and make doctor’s appointments. They can also make sure their teen or young adult has this basic checklist before they leave home:

  • Keep supplies on hand to manage low blood sugar (and healthy snacks to guard against high blood sugar).
  • Keep supplies organized so you know what you have and can get to them easily.
  • Keep contact information for your health care team and prescription information in a handy place.
  • Tell people close to you that you have diabetes and how to help you if needed.
  • Have a plan for sick days.
  • Ask for help if you need it.
  • Stay in touch with your health care team and let them know if you have questions or concerns.

Bridge the Gap

Family support is the strongest predictor that teens and young adults will stick with their diabetes treatment plan. Parents can serve as the “home team” to help them stay on track as they become more self-reliant by:

  • Respecting their new independence, but staying connected. Ask how you can help.
  • Helping your teen understand how their insurance plan works as well as its benefits and limitations.
  • Reminding teens about short-term benefits of managing their diabetes, not just focusing on long-term health problems. They’re more motivated to take care of themselves if it helps them feel better physically and take part in normal activities with their friends.
  • Asking about any life issues that may be getting in the way of good self-care, such as trouble making and keeping doctor’s appointments.
  • Encouraging your teen to ask their health care provider for a referral to diabetes self-management education and support (DSMES) services. Diabetes education is strongly linked to better blood sugar management!