Dayna Akiu, middle, got a group hug from her siblings Nicole, Chelsie and Micah at their home in Salt Lake.
Voices for the cure
An Oahu girl is among
150 kids asking Congress
to fund diabetes research
Thirteen-year-old Dayna Akiu may seem like a typical kid when she's playing soccer, singing with her school choir or hanging out with friends.
But her life depends on pricking her finger six to eight times a day to test her blood sugar and balancing her exercise and what she eats with insulin injections.
The Kamehameha Schools student will be among 150 children nationwide appealing to congressional leaders Tuesday and Wednesday for a cure for Type 1 diabetes.
"I want to be like a normal kid and not worry about complications," Dayna said in an interview before she and her mother, Dena, were to leave Friday night for Washington.
Dayna was chosen by the Hawaii Chapter of the Juvenile Diabetes Research Foundation to represent Hawaii at the Children's Congress, held every two years since 1999 to raise national awareness about Type 1 (juvenile) diabetes.
Led by Foundation Chairman Mary Tyler Moore, the children, researchers, business and community leaders will testify at a Senate hearing on the need for continued funding for research on the autoimmune disease.
With Type 1 diabetes, the body's immune system destroys cells of the pancreas that produce insulin, a hormone that regulates the level of glucose or sugar in the blood. It's known as juvenile diabetes because it most often occurs in children and adolescents but it also strikes adults.
Type 1 diabetics are dependent on insulin, either injected manually multiple times a day or from a small pump worn outside the body. Insulin is delivered automatically from the pump via a plastic tube and needle inserted in the skin.
Devastating complications from the disease may include kidney failure, blindness, nerve damage, amputations, heart attack and stroke. The foundation estimates that related health care costs run $132 billion a year in the United States.
One of four children of Dena and Edward Akiu, Dayna was diagnosed with Type 1 diabetes when she was 5.
"I noticed she was going to the bathroom a lot, everywhere we went," her mother said. "And she was always thirsty.
"One day I was giving Dayna a bath, and I didn't remember her looking so skinny. I took her to the doctor. She had lost four pounds in less than a year and 5-year-olds don't lose weight."
When she told the doctor about Dayna's thirst and frequent urination, he said he thought she had Type 1 diabetes, Akiu said. Dayna became so ill that night she had to take her to the emergency room at Kapiolani Medical Center for Women and Children, she said.
"They put her in the pediatric intensive care unit and started an insulin drip. I called the doctor and said her stomach was bloated and she was throwing up after a big jug of orange juice (which drove up her glucose level)."
The doctor had results back from Dayna's blood test confirming she had Type 1 diabetes, Akiu said. "I was in shock. I didn't know the first thing about diabetes."
The child was hospitalized for a week during which the family learned how to give her insulin shots, practicing on oranges and trying to figure out insulin dosages.
Dayna's insulin pump works in conjunction with a wireless glucose meter and calculates the amount of insulin needed to be administered.
"One thing that was gold at the time, that was sugar-free Jello. She had such a good appetite, they couldn't keep up with it. They kept calling the cafeteria to bring it to her room. By the end of the week, I knew where to go to the kitchen to get it."
The first diabetes support group meeting after Dayna's Oct. 11 diagnosis was a Halloween function, Akiu said. "It was so good. I met families and diabetes educators. They had sugar-free gummy bears in a little snack bag."
A diabetes educator told her that they should be eaten in moderation or they would cause diarrhea, Akiu said. "As soon as I looked down, the bag was empty. She was not comfortable that night."
Akiu said the family is still learning about the disease as Dayna grows and her body and needs change.
Dayna had five to seven insulin shots a day until she went on an insulin pump three years ago, Akiu said. She was excited about receiving an upgraded pump just before leaving for Washington.
She constantly checks her blood sugar, a job Akiu assumes between 2 and 4 a.m. If it's high, she gives her insulin. "You hear of kids having seizures during the night because activity can bring insulin down," she explained.
Dayna plays soccer for Kamehameha and with the Real Hawaii Futbol Club, which won the under-12 premier division, U.S. Club Soccer National Championship last year.
She must check her blood sugar before and after each game and at half-time, her mother said. She removes her insulin pump during the game.
She also sings in the school choir and is a good student, entering ninth grade in the fall, her mother said.
Every year before school starts, Akiu said she writes a letter on "what to watch for, highs and lows" and gives it to all of Dayna's teachers. "They've been very good," she said.
The Salt Lake family, including Chelsie, 17, Nicole 15, and Micah 4, have participated as "Dayna's Dream Team" for eight years in the annual Juvenile Diabetes Research Foundation's Walk to Cure Diabetes on Oahu.
Dayna said she told her friends about her disease. "They think it's cool because, like, when they watch me check my sugar and take shots."
But "being different" is hard, she said. "I have another responsibility along with everything else."
Cardiac risks higher
for kids with diabetes
A surprisingly large percentage of youths with diabetes have multiple risk factors for cardiovascular disease, says a Hawaii researcher participating in a nationwide study of juveniles with diabetes.
About 21 percent have what's called the "metabolic syndrome," characterized by three or more risk factors for heart disease, says Dr. Beatriz Rodriguez, principal investigator in Hawaii for a nationwide study entitled "SEARCH for Diabetes in Youth."
Risk factors include diabetes, high blood pressure, abdominal obesity and abnormal fat levels in the blood, such as high triglycerides, and low levels of good cholesterol.
"All of these kids had diabetes, so they needed only two more risk factors," Rodriguez pointed out. "Interestingly also, we found metabolic syndrome in children under 10 years old."
She said youths from minority groups have a higher rate of metabolic syndrome than Caucasians. In particular, she noted, 37 percent of Asian and Pacific Island youths with diabetes have multiple risk factors for heart disease compared with 16 percent of non-Hispanic whites.
Hawaii has one of six centers participating in the five-year investigation, funded by the U.S. Centers for Disease Control and Prevention with support from the National Institutes of Health. Others are in Ohio, Colorado, South Carolina, Washington and California.
The Pacific Health Research Institute is conducting the Hawaii project with major health plans. Co-investigators are Drs. J. David Curb, Greg Uramoto, Sorrell Waxman, Wilfred Fujimoto, Teresa Hillier (of Kaiser Permanente) and Beth Waitzfelder.
Findings of the study -- the first to examine the extent of diabetes in the nation's youth population -- underscore the importance of weight control and daily activity for juveniles, said Rodriguez, University of Hawaii professor of geriatric medicine, public health science and epidemiology.
Untreated, metabolic syndrome in youth may lead to premature heart disease and death, she said.
Rodriguez said 12 abstracts from the study were submitted at the American Diabetes Association's annual meeting last week in San Diego. She is lead author of a paper on metabolic syndrome and gave an oral report on it.
In an interview, she cited these major findings of the study:
» Type 2 diabetes, involving a condition called insulin resistance when the body cannot use insulin well, was found in youths of all ethnicities but was more common in minorities. It rarely occurs under age 10.
» About one in 750 Asian/Pacific Island youths 10 to 19 years old has any type of diabetes, which is low compared with other ethnic groups. But Type 2 diabetes is three times greater in Asian Pacific Island youths than in Caucasians.
» The centers estimated there are about 154,000 children under age 20 with diabetes in the United States. Hawaii has about 50 new cases annually.
» More than 10,000 cases in youths of all ethnicities under 20 years old were identified at the six sites, about 360 in Hawaii.
» More youths with diabetes are overweight or at risk for being overweight than those without diabetes.
» Only 10 percent of adolescents with diabetes followed dietary recommendations for total fat intake of less than 30 percent.
She said 93 percent of youths with Type 2 diabetes had at least three cardiovascular disease risk factors, including diabetes, and 18 percent of those with Type 1 diabetes had the metabolic syndrome. It was especially common in ethnic minorities, she said.
There is some indication that diabetes is increasing and the centers are applying for funding to continue research for another five years, Rodriguez said. They want to look at trends, the natural history of the disease and how children with diabetes are being treated.
For information about the nationwide study, call 441-5530 on Oahu or 1-800-916-3320 on the neighbor islands.
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