Overcoming Juvenile Diabetes With a Little Planning And High-Tech Tools
by Damian McNamara
The challenges of being a teen with Type 1 diabetes are many. Forget the junk food at the mall or pigging out at a party. You can't sleep late, because your blood sugar (glucose) levels can drop dangerously during an extended snooze. It can be tough to find a safe and private place to monitor your glucose levels and inject yourself with insulin while at school.
It is possible, however, to stay on top of the condition and still do most things a typical teenager does. But "don't disregard it," advises Ryan Dinkgrave, a 16-year-old Michigan high school student with Type 1 diabetes. "Control the diabetes; don't let it control you."
Sticking to your doctor's recommendations is essential to leading a healthy life, says Robert Goldstein, M.D., vice president of research for the Juvenile Diabetes Foundation. "If you go by the book, you will handle it extremely well."
A Diabetes Diagnosis
Most people are first diagnosed with Type 1, or juvenile, diabetes during the teen years. Although this is a time when fitting in with your friends can be important, "don't think you're different because of it," Ryan says. More than 400,000 new cases are reported in children and adults up to age 24 in the United States each year. And more than 1 million Americans currently live with the condition.
There is much to learn after a diabetes diagnosis, particularly how important it is to take insulin regularly, eat a proper diet, and monitor blood sugar levels. Failure to keep what doctors call "tight control" over the disease can be very serious. This means being more responsible for your well-being than most teenagers.
"For teens newly diagnosed with Type 1, I tell them that there is good news and bad news," Goldstein says. "The bad news is that, yes, you have this disease. The good news is that we know an extraordinary amount about it."
"It was a real shock, because I knew nothing about diabetes," says Ryan, recalling his diagnosis at age 10. "It was a lot to take in--they hit me with a lot of information." At the University of Michigan, where Ryan goes for medical care, doctors now give most information to patients on a follow-up visit, not at the time of diagnosis.
The diet for teenagers with Type 1diabetes resembles what health experts consider a healthy diet for anyone. Goldstein points out that many teenage Americans don't watch their diets closely or live a healthy lifestyle. So those with diabetes tend to be more aware of nutritional requirements than other teens. "There is a big trend in this country to eat right and exercise, but it's not something that catches on in general until you're in your 30s," Goldstein says.
The Importance of Insulin
Medical experts say Type 1 diabetes develops when the immune system turns against the body, or, more specifically, against the cells in the pancreas--called islet cells--that produce insulin.
Insulin is a hormone that helps break down glucose in the blood. Children and teens with diabetes typically monitor their blood levels and inject insulin three times a day, and some may need to do it as many as five times a day. Although insulin from outside sources--animals or genetically engineered cells --does not cure diabetes, it can help people avoid some serious consequences of the condition, including blindness, heart attacks, seizures, strokes, limb amputations, and kidney failure.
A major drawback to injecting insulin is that glucose levels can "swing"--up high right after an injection, down low before the next. And injections have to be timed with meals. Ryan says he considers keeping up the blood testing and shots to be very important. Other teens with diabetes "might forget how serious it is because the day-to-day insulin shots become so routine. I've had three seizures from low blood sugar," he says.
"It's hard to improve on insulin," says Robert Misbin, M.D., a medical officer in the Food and Drug Administration's division of metabolic and endocrine drug products. "It's a very powerful drug. The problem is that many injections a day are required. What would be better is an infusion that could be regulated to match food intake."
The emphasis in Type 1 diabetes research is to find a more convenient and effective way to administer insulin. One way to do this is with the insulin pump, approved by FDA in the early 1990s. The pump, which contains 6 to 8 ounces of insulin, delivers it through a tiny needle stuck under the skin on the left side of the abdomen. The bloodstream absorbs a small, continuous dose of insulin throughout the day. A hand-held telemetry unit, similar to a TV remote, is used to signal the pump to give a little extra insulin, if needed. A different kind of pump that is implanted in the body is being tested in clinical trials now.
To help maintain tighter control on his insulin levels, Ryan switched to an insulin pump in 1998. When doctors first told Ryan about the pump, he was reluctant to try it. But when he learned that he would have to add another insulin injection to his daily routine--for a total of four--he decided to give it a try. "It grants you a whole new freedom," Ryan says. "You can eat whatever you want. With injections, you have to plan ahead." He added that with more freedom comes more responsibility, such as calibrating and refilling the unit, but "it's definitely worth it."
Before Ryan switched to an insulin pump, like many teens with diabetes, he had to find a safe and private place at school to measure his blood sugar and inject insulin. "It was an issue with the school for me," he explained. "Where I would do it became the issue. They set me up in a staff bathroom with a locked cabinet in it, but it was broken into. It was a struggle for a while."
Ryan says some people at his school were reluctant to help him with his injections for fear that they would be sued if something went wrong. "People especially don't want to give you an injection of glucagon when you pass out from low blood sugar. [Emergency Medical Services] just started doing it in my area." Glucagon is a hormone that raises the level of sugar in the blood.
Most diabetics still use a needle and syringe to inject insulin. Also available are insulin pen injectors, which resemble a ball point pen. Researchers are studying inhaled insulin, which could be taken using a device similar to an asthma inhaler. One drawback to this approach is that it still requires many doses per day.
Other researchers are investigating a patch that would deliver insulin through the skin. One hurdle that remains is that insulin does not cross through the skin as easily as other molecules, for example, the nicotine in the patch that smokers wear when they want to quit using tobacco products.
In June 1999, FDA approved the first device to continuously monitor tissue glucose levels. The device has a tiny needle that is inserted under the skin of the abdomen and connected to a unit about the size of a pager that records the numbers. Although the device takes readings every five minutes for up to three days, it doesn't replace the usual blood glucose readings. People with diabetes still must perform daily finger sticks to check their blood glucose. The sensor provides trends rather than actual glucose levels, and the patient doesn't see the glucose information while wearing the device because it is not displayed on the device's monitor. The data are stored and transmitted to a computer to be evaluated only by a doctor. One reported drawback is that these devices have to be calibrated often to remain accurate.
There are several promising pathways in diabetes research, says Goldstein. For example, some researchers are working on a vaccine for diabetes, which might someday prevent the disease in newborns much the same as shots for measles or hepatitis B.
"I would also like to find the cause, or trigger, that makes the immune system go haywire," Goldstein says. "Like other autoimmune diseases, there may be a genetic predisposition to getting diabetes, but the trigger is environmental, such as a virus." He added that there is a generation of drugs in development aimed at blocking such triggers.
Genetic engineering may be used someday to convert certain cells into islet cells--stem cells, for example, which the bone marrow uses to make blood cells. These specially designed cells would also resist rejection. Rejection is a concern in any patient because the body's immune system recognizes any transplanted cells as foreign and destroys them. In a person with diabetes, there is the added challenge of stopping the rejection of islet cells in the pancreas that caused the disease in the first place. In other words, before a diabetes patient's islet cells can be replaced, researchers want to make sure these cells won't be rejected a second time.
"The major change we've seen in the last 15 years or so is the ability to do home blood sugar monitoring. That has had a major impact," says Misbin. "The future will hopefully bring [new] ways of measuring blood sugar levels noninvasively."
"Our greatest challenge is to find a way to make [juvenile diabetes] go away," says Goldstein. Ryan is optimistic about a cure being found soon. "I don't picture myself having a pump 10 to 20 years from now. We're at a point where I think all it will take is a little extra push to get a cure."
Ryan's positive outlook is due in part to attending the first-ever Juvenile Diabetes Foundation Children's Congress. The foundation's delegation of 100 children and teens with Type 1 diabetes from around the country appeared before legislators last year. Led by Juvenile Diabetes Foundation international chair Mary Tyler Moore, the delegates asked lawmakers to increase research spending for diabetes.
"It was interesting, too, to see how the government works when it comes to raising money for research," Ryan says. "I came back with a new motivation for working on [my] Website [for juvenile diabetes patients], and with a new sense of urgency for a cure."
"I've found that teenagers with diabetes are extraordinary," Goldstein says. "They become really, really smart--the implication being that they are role models to fellow teens who don't have diabetes, teaching them how to handle something like this." The added responsibility of sticking to a daily regimen of insulin injections, blood glucose monitoring and a healthy diet makes teens with Type 1 diabetes grow up faster than other teens, he adds.
"The everyday effort it takes is worth it," says Ryan. "You learn that you have to be prepared in case something happens. It makes you more mature, I think."
Damian McNamara is a writer in New York City. This article originally appeared in the FDA Consumer magazine, July-August 2000 issue.