PFM The Magazine

Type 1 diabetes occurs when the body's own immune system destroys the insulin-producing cells of the pancreas (called beta cells).

Normally, the body's immune system fights off foreign invaders like viruses or bacteria. But for unknown reasons, in people with type 1 diabetes, the immune system attacks various cells in the body. This results in a complete deficiency of the insulin hormone.

Some people develop a type of diabetes – called secondary diabetes -- which is similar to type 1 diabetes, but the beta cells are not destroyed by the immune system but by some other factor, such as cystic fibrosis or pancreatic surgery.

Understanding Insulin and Type 1 Diabetes

Normally the hormone insulin is secreted by the pancreas in low amounts. When you eat a meal, sugar (glucose) from food stimulates the pancreas to release insulin. The amount that is released is proportional to the amount that is required by the size of that particular meal.

Insulin's main role is to help move certain nutrients -- especially glucose -- into the cells of the body's tissues. Cells use sugars and other nutrients from meals as a source of energy to function.

The amount of sugar in the blood decreases once it enters the cells. Normally that signals the beta cells in the pancreas to lower the amount of insulin secreted so that you don't develop low blood sugar levels (hypoglycemia). But the destruction of the beta cells that occurs with type 1 diabetes throws the entire process into disarray.

In people with type 1 diabetes, sugar isn't moved into the cells because insulin is not available. When sugar builds up in the blood instead of going into cells, the body's cells starve for nutrients and other systems in the body must provide energy for many important bodily functions. As a result, high blood sugar develops and can cause:

• Dehydration. The build up of sugar in the blood can cause an increase in urination (to try to clear the sugar from the body). When the kidneys lose the glucose through the urine, a large amount of water is also lost, causing dehydration.
• Weight loss. The loss of sugar in the urine means a loss of calories which provide energy and therefore many people with high sugars lose weight. (Dehydration also contributes to weight loss.)
• Diabetic ketoacidosis (DKA). Without insulin and because the cells are starved of energy, the body breaks down fat cells. Products of this fat breakdown include acidic chemicals called ketones that can be used for energy. Levels of these ketones begin to build up in the blood, causing an increased acidity. The liver continues to release the sugar it stores to help out. Since the body cannot use these sugars without insulin, more sugars piles into the blood stream. The combination of high excess sugars, dehydration and acid build up is known as "ketoacidosis" and can be life-threatening if not treated immediately.
• Damage to the body. Over time, the high sugar levels in the blood may damage the nerves and small blood vessels of the eyes, kidneys, and heart and predispose a person to atherosclerosis (hardening) of the large arteries that can cause heart attack and stroke.

Who Gets Type 1 Diabetes?

Although the disease usually starts in people under the age of 20, type 1 diabetes may occur at any age.

The disease is relatively uncommon, affecting 1 in 250 Americans. The condition is more common in whites than in blacks and occurs equally in men and women.

What Causes Type 1 Diabetes?

Doctors don't know all the factors that lead to type 1 diabetes. Clearly, the susceptibility to the condition can be inherited.

Doctors have identified that an environmental trigger plays a role in causing the disease. Type 1 diabetes appears to occur when something in the environment -- a toxin or a virus (but doctors aren't sure) -- triggers the immune system to mistakenly attack the pancreas and destroy the beta cells of the pancreas to the point where they can no longer produce sufficient insulin. Markers of this destruction -- called autoantibodies -- can be seen in most people with type 1 diabetes. In fact, they are present in 85% to 90% of people with the condition when the blood sugars are high.

Because it's an autoimmune disease, type 1 diabetes can occur along with other autoimmune diseases such as hyperthyroidism from Grave's disease or the patchy decrease in skin pigmentation that occurs with vitiligo.

What Are the Symptoms of Type 1 Diabetes?

The symptoms of type 1 diabetes are often subtle, but they can become severe. They include:

• Increased thirst
• Increased hunger (especially after eating)
• Dry mouth
• Nausea and occasionally vomiting
• Abdominal pain
• Frequent urination
• Unexplained weight loss (even though you are eating and feel hungry)
• Fatigue (weak, tired feeling)
• Blurred vision
• Heavy, labored breathing (Kussmaul respiration)
• Frequent infections of the skin, urinary tract, or vagina

Signs of an emergency with type 1 diabetes include:

• Shaking and confusion
• Rapid breathing
• Fruity smell to the breath
• Abdominal pain
• Loss of consciousness (rare)

How Is Type 1 Diabetes Diagnosed?

If your health care provider suspects diabetes, he will first check for abnormalities in your blood (high blood sugar level). In addition, he may look for glucose or ketone bodies in the urine.

There is currently no way to screen for or prevent the development of type 1 diabetes.

Learn more about diabetes blood tests.

How Is Type 1 Diabetes Managed?

Many people with type 1 diabetes live long, healthy lives. The key to good health is keeping your blood sugar levels within your target range, which can be done with meal planning, exercise and intensive insulin therapy. All people with type 1 diabetes must use insulin injections to control their blood sugar.

You will also need to check your blood sugar levels regularly and make adjustment of insulin, food and activities to maintain a normal sugar.

Consequences of Uncontrolled Type 1 Diabetes

When type 1 diabetes isn't well controlled, a number of serious or life-threatening problems may develop, including:

• Retinopathy. This eye problem occurs in 75% to 95% of adults who have had diabetes for more than 15 years. Diabetic retinopathy in type 1 diabetes is extremely rare before puberty no matter how long they have had the disease. Medical conditions such as good control of sugars, management of high blood pressure, and regulation of blood fats like cholesterol and triglycerides are important to prevent retinopathy. Fortunately, the vision loss isn't significant in most people with the condition.
• Kidney damage. About 35% to 45% of people with type 1 diabetes develop kidney damage, a condition called nephropathy. The risk for kidney disease increases over time and becomes evident 15 to 25 years after the onset of the disease. This complication carries significant risk of serious illness -- such as kidney failure and heart disease.
• Poor blood circulation. Damage to nerves and hardening of the arteries leads to decreased sensation and poor blood circulation in the feet. This can lead to increased risk of injury and decreased ability to heal open sores and wounds, which in turn significantly raises the risk of amputation. Damage to nerves may also lead to digestive problems such as nausea, vomiting, and diarrhea.

by Shelley Lowenstein

It's been more than a year since our 15-year-old daughter, Emma, was diagnosed with type 1 diabetes (juvenile diabetes). Fifteen months—that's 1,445 insulin injections, and at least 2,910 finger pricks to test her blood sugar levels—since the doctor identified her weight loss and constant thirst as classic symptoms of that disease.

Living with type 1 diabetes is a pain. It's 24/7, no weekends off. It has forced our family to understand the body in a way that most people never will. Ask anyone what the pancreas does—chances are he won't have a clue. But we know. Beta cells in the pancreas produce insulin that moves sugar from food through the bloodstream and into cells, where it's used as fuel. Basically, the pancreas helps process the energy that keeps us going.

But Emma's pancreatic beta cells no longer work, so she has to inject herself with insulin to prompt her body to burn sugar. She must also count carbohydrates at every meal and exercise regularly to lower her blood sugar. If she is lax, the excess sugar in her system could eventually become toxic and cause complications like blindness, kidney disease, nerve damage, heart problems and even death.

My husband and I spent the first few days after the diagnosis at the hospital with Emma. The three of us were plunged into an intense course in biochemistry, physiology, and nutrition. Emma fought tears as she asked the type 1 diabetes educator, "Will I die? Will I be able to have children?" The nurse answered frankly. "No, you won't die if you take care of yourself. And yes, you can have children, but you will be a higher risk." From there, we learned how food affects blood sugar, how mood swings can indicate sugar highs and lows, and the many kinds of insulin and how to mix them. We were scared and overwhelmed.

Emma just wanted to get on with life. Two days after she was diagnosed, she tried to give herself a shot. It hurt too much, so I did it for her, despite my churning stomach. The next day, she managed without me. On her first day back at school, she played in a lacrosse game. My husband and I watched from the sidelines, awed by her bravery and fearful that the vigorous exercise might lower her blood sugar so much she'd pass out. She didn't, and that weekend she even went to a party—with a syringe of insulin and a sandwich in her purse.

I had a much harder time moving on. Like many mothers of newly diagnosed diabetic kids, I was in shock. Could I have prevented the disease? Why hadn't I seen it coming? I was devastated that type 1 diabetes had stolen my daughter's innocence. My heart ached so that I could not breathe at times. I prayed that it was all a mistake.

In the months that followed, my husband and I walked a fine line between letting our teenager live her life and watching her like a hawk. We packed her lunches so we could monitor what she ate. We posted notes on the front door reminding her not to leave home without her blood-sugar testing kit, insulin and snacks. We put bottles of soda in every car and tubes of icing in every backpack, briefcase and purse in case Emma "crashed" and needed a quick boost.

Slowly, type 1 diabetes has become part of our lives. Emma can talk about it now, if only with her closest friends. She is more assertive about what she needs—making sure the waiter brings her a diet soda, instead of a regular. I have stopped crying. And I am learning to back off.

"How's Emma?" friends ask. Most days, she's fine. But she can never go more than a few hours without thinking about her disease, and that gets old.

When Emma was diagnosed, one of her doctors predicted that my husband and I would be very different people in a year's time. Amazingly, we are. We have re-focused the energy we spent worrying to promoting awareness about juvenile diabetes and raising funds for research we believe will lead to better ways of managing the disease and, eventually, a cure.

This week, Emma starts using an insulin pump, a computerized delivery system that frees her from the regimen of scheduled meals and injections. Meanwhile, we still dream of the day when her doctor calls and says, "Emma, make an appointment for your cure."

by Erin Rabideau, 17

I am 17 and have had type 1 diabetes (juvenile diabetes) since I was 12. My diagnosis was a shock to everyone considering that there was absolutely no history of type 1 diabetes in my family at all. For a year prior to the diagnosis I constantly felt sick. During the two weeks before I was diagnosed, I drank 4 times the amount that I usually did, and had to use the bathroom after each of my classes everyday. My parents decided that I should see the doctor, who sent me directly to the emergency room after sugar was discovered in my urine. From that point on it was like a whirlwind of information being fed to us.

I'm sure that you and your family are experiencing the same overwhelming feeling of, "Ok, I have diabetes, what now?" First of all, you have to know that you are not alone. My story is only one of millions. However, it is still easy to feel lonely when most of your friends and family do not have type 1 diabetes. There is actually a whole online community that connects many teens and kids with diabetes to one another through e-mail. Most people are very open and happy to share any experiences and advice that might help you.

Coinciding with that theme that you are not alone, get involved!  Type 1 diabetes is not a death sentence. It opens many doors to exciting new opportunities. Everyone is fighting for the same cause, and being included gives a great feeling of hope and strength.

Since I was diagnosed I have had many memorable experiences. I participated in the JDRF Children's Congress, which is where hundreds of kids and teens with type 1 diabetes go to Washington, D.C., and meet with their Congressional Members in order to explain to them why supporting a cure for type 1 diabetes is important.

I also had the opportunity to visit companies like Coke, Paine Webber, American Express, Prudential, and JDRF International and speak to executives about my story and encourage them to help raise money for the JDRF Walk to Cure Diabetes. I organized a support group for teenagers with type 1 diabetes; the group and I arranged a sugar-free Halloween party for kids, helped out at the JDRF Walks, and worked with kids with type 1 diabetes through baby-sitting and entertainment during JDRF luncheons. Each of these experiences was extremely rewarding and I wouldn't be the person I am today without them.

Only without motivation and effort can we lose in this fight. We must all band together, do all that we can to help one another, and promote understanding of this disease. We must prove to the world that a cure is important, and that is not possible by doing nothing. Let's not accept that type 1 diabetes will determine our future. Let's make our future and make people see that we will not be subdued until a cure is found.

by Allison Blass, 17

When I was diagnosed with type 1 diabetes (juvenile diabetes) at eight years old, I didn't know anything about it. Who ever heard of insulin? A pancreas? What's that? So explaining it to my friends when I returned to school was going to be a challenge. Lucky for me, my friends were supportive and never made me feel like I was different or weird because I poked myself with a needle. In fact, a couple of them thought it was cool. (Some still do!)

The first person I told was my best friend, Jenny. I called Jenny on the phone and gave her the news. Of course, she was concerned. She was worried about me and wanted to make sure I was going to be okay. That's what best friends are for.

Jenny says, "I figured I could be here for you. I was never like, 'Oh my god, I can't talk to her now, she has diabetes'. I think for most kids, no matter what, their friends should be concerned about them as opposed to 'Oh my god, she has diabetes! I can't ever talk to her again.'"

Another friend of mine, Rebecca, says, "I value people for who they are, not what they have." Remember, when introducing type 1 diabetes to your friends that they are friends because of you—the whole package. Type 1 diabetes is only one part of the unique person that you are. 

Education is very important in helping people understand what you're going through. To explain to my friends what type 1 diabetes was, my mother and I gave a presentation in front of my class. We brought in diagrams and my type 1 diabetes supplies. I demonstrated a blood sugar reading to show that it was no big deal. We told them what to do if I was shaky or weak. I believe the kids really liked knowing what was going on. Type 1 iabetes is a huge part of your life, but so are friends. Rebecca adds, "People need to be educated so that they don't have any misconceptions."

But there are a lot of "what ifs". What if they stare at my pump? What if they're grossed out by blood? What if they laugh that I can't eat popcorn at the movies because it's not snack time? What if… The list could go on forever.
 
Lucky for us, people can't tell by looking that you're a person with diabetes. But for some, pumps and even medical ID bracelets can attract some unwanted attention. How to deal? Ignoring is an option, but I prefer to explain to people what it is. Usually people are just curious.

I met Julia when we were fifteen and I had only had my insulin pump for a couple months. Julia tells me, "I don't know if I even noticed it when I first met you, and I was mostly puzzled.  'Did she say that's her pump? What the heck is it?'. Now I'm just used to it." I explained to her, and my other friends, what the pump was and how it helped me. A lot them were really supportive of it when they learned that it was going to help me in so many ways.

Blood, however, is another story. Not only do you get the stares, but you can also get the "Gross", "Ew", and "Are you on drugs?" comments. So what's a kid to do? First, understand where they're coming from.

Julia says, "It was kind of icky. I'm a bit squeamish at times about needles and blood but after a couple times it just wasn't a big deal anymore." People aren't used to seeing needles on a day-to-day basis, so it does take some adjustment. Julia adds, "I got used to it."

The other thing is, like the insulin pump, your friends will get used to it, and eventually they will not even notice. Another interesting thing is the positive reactions you get from taking your number in front of your friends. Crowds of kids actually stand over my desk as the meter is counting down. It's crazy, I know…

Food for any type 1 diabetic is a big adjustment. Friends may want to eat something, but if it's not on your meal plan, you can feel left out. Tell your friends about your meal plan, and they might be less likely to spring a milkshake splurge on you. For parties, let the host know ahead of time to stock up on diet sodas and chips. If you know ahead of time that you'll be going to a party (like on Halloween), talk to your type 1 diabetes doctor or educator. They'll be able to help keep your numbers down while enjoying the party.

Life with type 1 diabetes is crazy and complicated. Life with type 1 diabetes and with friends is even more crazy and complicated. Adjusting to a life with both can be awkward and scary. But like everything else, things will fall into place. After awhile, you won't even notice.

To support families in the wake of hurricanes, earthquakes, terrorist attacks, or any event involving emergency conditions, JDRF has created helpful emergency preparedness infomation.

Type 1 Diabetes Emergency Checklists are useful in informing individuals who are not familiar with the clinical aspects of type 1 diabetes (juvenile diabetes) what to do in case they are faced with a diabetes emergency.

Sample School Type 1 Diabetes Care Forms offer a comprehensive overview of the Section 504 Plan. Section 504 is a federal legislation requiring the school to provide reasonable accommodations related to a child's type 1 diabetes before, during, and after school.

Finally, the September 2005 issue of the JDRF Life With Diabetes e-newsletter provides critical information on such topics as caring for your child with tyep 1 diabetes in times of crisis, an emergency "survival guide," and tips for dealing with new schools.