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The BITTER LEGACY
of DIABETES

by   SUSAN WOOD

(Photo of woman getting eye exam)type 1 treatment

regular insulin shots or pump
diet and exercise
blood sugar monitoring

type 2 treatment

diet and exercise
medication
blood sugar monitoring


"THAT WHICH does not kill me makes me stronger," philosopher Friedrich Nietzshe said in Twilight of the Idols, a glimpse of European culture in the 19th century.

But to Carolita Allen, 54, the philosopher's timeless message speaks volumes about the Karuk tribal member's personal, modern-day fight overcoming diabetes, a disease the Centers for Disease Control calls the "epidemic of our time."

In turn, the Eureka woman found a healthier but more disciplined way of living .

"When my mom had it, I should have done more to follow up on it," she said, referring to a common cross-generational pattern.

"She was really sick all the time," she said, recalling her mother's struggle. She died 30 years ago, succumbing to a heart attack, a common complication along with blindness, strokes and limb amputations.

In 1996, Allen was diagnosed with type 1, a type of diabetes in which the pancreas "poops out," clinicians say. She was weak, wanting to "sleep all the time."

Then, one day Allen's sister-in-law found her passed out on the floor of her house. "It was so scary. Everything went dark," she said. Allen remained in General Hospital's intensive care unit for 13 days, but the ordeal changed her life forever.

"It was so hard on me. I hate needles," she said of the common complaint of type 1 diabetes. With this insulin-dependent condition, a patient must have daily injections.

Rachel Robinson, the coordinator of the diabetes awareness program at United Indian Health Services, rushed to Allen's side, taught her how to give herself injections and introduced her to diabetes management. Robinson has since left UIHS to take a job at the International Diabetes Center in Minneapolis. But to this day, Allen continues with the program, despite her health's turbulent past.

Allen at 4 foot, 11 inches high has endured as much of a topsy-turvy ride with her health as her weight, fluctuating from 144 to 180 pounds. The latter was her mother's weight before losing 65 pounds in a single year.

"You wouldn't believe how much I'd eat every day," she said, adding her blood sugar level has soared to 800 in her most challenging peak periods. Normal ranges from 80 to 120, dieticians say.

Every time it seems she's slipping in terms of monitoring her health and glucose levels, the former runner buckles down with an exercise regimen and meal plan she tries to follow daily.

A typical day consists of hot cereal or scrambled eggs for breakfast, soup and sandwich for lunch and fish or chicken for dinner, with injections, glucose tests, medications, walks and stair-stepper sessions scheduled in between.

But consistency is easier said than done, she admits.

Visiting often is Allen's grandson, who flops between scolding her for eating a bag of potato chips to caving in to sweets himself.

"Grandma, I know you're sick, but I like pies," Allen said, recalling her grandson's words one recent visit.

Still, her eight grandchildren are a major reason for living for her, she said, considering herself lucky to be alive.

As the world of medicine goes, the metabolic disease itself isn't the killer as much as the complications caused from it. Many cases of blindness, heart attacks, strokes and limb amputations can be traced to diabetes.

Diabetes strikes an estimated 16 million Americans in every age or race, although it's disproportionately hard on ethnic groups such as Hispanics, Pacific Islanders and African and Native Americans from several tribes.

Researchers at the John P. Roberts Institute in Ontario have discovered a genetic mutation exclusive to a Canadian aboriginal group that may isolate diabetes-causing genes in specific ethnic groups, a national health report indicated last month. Scientists called the find an important new clue that may pave the way for preventive measures by those at risk. In this case, the Oji-Cree tribe in Northern Ontario have the world's highest prevalence of type 2 diabetes, which affects about 95 percent of those with the disease.

There are no solid scientific reasons why the disease targets certain ethnic groups, only mental and physical theories among clinicians, dieticians and outreach workers that may have originated hundreds of years ago.

Theoretically, it's been said the disease may be induced with the trauma of losing one's culture or metabolisms designed for a different time and environment thrown into a more sedate, junk-food-laden society. For example, an oral history has shown Native Americans were highly active when they hunted and gathered their food, a North Coast doctor who sees many diabetes patients points out.

"Their systems (of living) were beautifully suited for their bodies," said Dr. Terry Raymer, medical adviser for the UIHS diabetes expansion and awareness program since last February. Raymer makes an evolutionary case that the "violent" insertion of an "invasive" civilization years ago may have been a shock to the native peoples' physiological systems, and perhaps they "couldn't evolve quickly enough to match the (new) culture."

Granted, Raymer is the first to say, the theory has not been proven and is only an opinion based on his observations.

As it is, Humboldt County Public Health Department does not track the incidence of diabetes, nor does the disease get reported adequately especially within these groups, the experts add.

"I listen to their stories, but that doesn't mean I'm an authority," Raymer said.

"There's something that's never understood unless you're a member of the population," said Faye Wong, associate director for diabetes education for the CDC. That's why Wong's department is releasing in May a major promotional campaign targeted specifically to Native Americans.

Focus groups with tribal members have indicated that previous campaigns lumping a message to all ethnic groups from one concept has not worked, Wong said.

The federally funded promotion that includes a 60-second spot showing generations of "Dancers" blends a respect for tradition with a new way of honoring the importance of body, mind and spirit, she explained.

"It's important that we conquer diabetes, otherwise it will conquer us," Wong said.

That's why a congressionally established working group of diabetes experts has recently called for $827 million in research funds, the National Institutes of Health reports.

The mortality rate associated with diabetes has risen 27 percent in the last two decades, the CDC reports. But even as the seventh leading cause of death in the United States claims more than 182,000 lives each year, those close to the struggle like Allen try to live by survival of the fittest.

It's not easy. But there's help along the way.

The UIHS diabetes awareness program offers support for dozens of Native American diabetes survivors to come together to share thoughts and a healthy, tasty meal. Stew and bread was on last month's menu.

Along with blood sugar control and exercise, good eating habits make up one of the hallmarks of diabetes management, the program continues to reinforce in its educational message.

"Diabetes responds to education, not just medication," said Bea Nix, the UIHS diabetes program's outreach worker since 1991. Nix makes field visits on patients of all walks of life from the 289 on the program's case load. She's witnessed "horrendous" results of the disease but also others that show the true strength of the human spirit.

Nix has noticed many people who are diagnosed get mad about their diagnosis, going through stages of grief.

"There's denial. There's anger. There's sorrow," Robinson said. "When you get diagnosed, it's a loss a loss of health (as you know it)," she said, also acknowledging a belief the natives grieve a loss of culture.

"People will sit in the office and just start crying," Robinson said.

"We've all talked about the various acts of trauma the native peoples have gone through," UIHS Child and Family Counselor Tene Frick said, generally speaking.

Fear of the unknown may spike a bout with depression, which can affect the way they care for themselves, Frick said.

"Your body tells you when you're not doing what you're supposed to," UIHS outreach worker Janice Eller, 51, of Crescent City said. Eller knows firsthand. The Native American woman was diagnosed in 1984 with type 2 diabetes, after a long bout with drugs and alcohol sent her into a diabetic coma walking home from the bar. She woke up in the intensive care unit of Rogue Valley Medical Center in Medford, Ore.

"I'm just thankful to be alive," she said.

These days she maintains a quest to her sobriety and to ensure others don't take the hard road as she did.

The UIHS outreach and clinical team makes a mission out of opening dialogue, building trust and carving a new path for Native American families affected by the disease.

"Habits are hard to change," Raymer said, adding the person must be willing to change bad eating patterns.

Registered dietician and certified diabetes educator Beth Schatzman agreed. The person with diabetes must demonstrate a "readiness to learn" to pull off a healthy, complication-free state of living in the world of diabetes, she said. Those who come to her for answers and help receive an "assessment" geared to their lifestyle. Schatzman outlines an individualized "meal-plans," not generalized diets, she stressed.

"I approach nutrition as a healthy, well-balanced diet that everybody should be on," Schatzman said, referring to the general population. Schatzman, herself a diabetic, helped to form the program at UIHS. Now she's the diabetes educator for the St. Joseph Health System.

The UIHS model program took roots in 1991, as one of 19 across the nation that spun out of federal grant money from the Indian Health Care Improvement Act of 1979. Locally, a grassroots effort was formed that involved representatives from local Native American tribes such as the Yurok, Karuk, Hupa and Wiyot.

Tribal leaders recognized and red-flagged the disease's prevalence and sought an educational program aimed at reducing the risk and surviving with dignity.

Treatment for diabetes involves a due diligence at monitoring glucose levels to accompany a well-balanced meal plan with lots of fresh fruits, vegetables and grains, and not at the least, exercise.

"It's very hard for most people to work that into their life," Schatzman said, stressing the importance of a workout routine throughout the week, every week. "You have to be more than a weekend warrior."

The worst habit illustrates the delicate balance of a total diabetes management program. Some people, when they work up a sweat, give themselves too much permission to cut loose on their meal plans afterward, she cautioned.

There lies within the importance of monitoring blood sugar levels throughout the day, with the number of times contingent on a patient's history and knowledge of their body's capabilities.

The consequences of straying from the regimen in the complete package vary in complications, when fat cells collect and clog the vascular system, Robinson said, simplifying the condition.

The scientific nature of the chronic, metabolic disease that affects virtually every tissue of the body is the least understood, Raymer said. In type 1 or 2 respectively, the body fails to produce or properly use insulin. This hormone converts sugar, starches and other food into energy needed for daily life.

The ramifications of having type 1 diabetes is its unrelenting, daily insulin demand, either through shots or a pump that releases more of a gradual amount of insulin continuously. But at least a million Americans nobly deal with the daily demands.

(Photo of Pump Girls)The pump usually implanted on the abdomen has even inspired a new teen music group called the Pump Girls formed last February. The four Southern Californian girls, all diagnosed with type 1, sing the praises of the life-saving tool at musical engagements, with a portion of their proceeds benefiting diabetes awareness programs. In May, the girls will be on the Today Show.

A member of the band, Brittany Rausch, 12, of Costa Mesa, says wearing the pump is like having a pancreas on the outside of her body.

"A lot of people think it's a pager," she said, giggling about its shape. Insulin pumps have made national headlines when Miss America, Nicole Johnson, showed hers during the pageant.

As for the 35 million people in the world dealing with type 2 diabetes, its downside involves its obscurity. Nearly 30 percent of those who suffer from it don't even know they have it. It usually develops in people who are older, have a history of diabetes or are obese.

And the research continues. Just weeks ago, scientists studying mice identified a gene that seems to affect a predisposition to diabetes and a tendency to get fat, the report from the journal Science indicated. The notion is, if people have the same gene drugs designed to take aim at the tendencies may help those with diabetes manage it better.

Some people manage it better than others, ophthalmologist Louise Minor said during a routine check-up of her patient Lorene Provence.

Minor estimates almost 20 percent of her patients suffer from diabetes, the leading cause of blindness in adults. "Diabetes is nothing to fool with," she said, pushing prevention as the key.

"Half of all diabetics are not getting proper eye care," she said. "You have to catch it early." By the time diabetics notice something's wrong, it's often times too late to save their vision, she explained.

Diabetes can cause a weakening of the body's blood vessels. The ones in the eye's retina are tiny and delicate, thus more susceptible to weakness. This deterioration of the retinal blood vessels, called diabetic retinopathy, can lead to vision loss.

That's why Provence gets her vision checked at least twice a year. "It's worth it to keep your sight," she said.

The Eureka woman, a Native American from the Choctaw tribe, recalled both her grandmothers were diagnosed with the disease. According to Robinson, women are also more at risk of getting diabetes.

In 1980 Provence became weak and "hungry all the time." She ate a lot, but didn't gain any weight, she said. And she developed an insatiable thirst to the point she could barely relieve herself enough.

Then one night she was driving home after work from the Humboldt County courthouse, her vision started to blur, and she couldn't see the stop signs. She went to the emergency room with a blood sugar level that soared to 900, a count that lead to her diagnosis.

"My first thought was needles," she said, grimacing.

But Provence faced her fear and went to work on her health. Beyond mastering the art of making homemade soups, she eats as many fruits and vegetables as she can, she said.

The Oklahoma native rotates an hour of time every other day on her three nautilus machines, the Health Rider, cross-country ski machine and the stair stepper, when she's not out on the dance floor cutting a rug.

"I can't wait for the (Dixieland) jazz festival," she said. At age 68, diabetes hasn't slowed her down.

Though some groups are singled out more than others, diabetes doesn't discriminate. It affects all ages and walks of life.

(Photo of Ann Bown-Crawford and son AnthonyA 9-year-old Arcata boy learned the harsh reality last September, when he got sick with a chronic stomach ache. Anthony Bown-Crawford's mother, Anne, said she noticed he was drinking fluid non-stop but remained dehydrated.

"He'd have to get up eight times a night," she said, throwing up a red flag. The clincher that drove her to take him to St. Joseph Hospital was a sweet-smelling odor from her son's bedroom.

Anthony was diagnosed as a type 1, requiring insulin injections.

The Crawfords have no known instances of diabetes in their family, providing a shock to Anne and her two sons.

But like Provence and others before them, the boy hasn't surrendered to the disease and his mother is proud. Both agree separately the lifetime challenge has made their relationship stronger.

"I have to do this the rest of my life, right?" his mother recalls her son's haunting words in the hospital. He had just learned his life would depend upon taking a few shots a day. When she replied yes, she recounted him ripping the syringe out of her hand and saying, "Then, I'm going to start now," she said.

Anthony has remained active, riding his Trek BMX bicycle, rollerblading and playing on the Humboldt Youth Soccer team. When he's not playing or engrossed in the latest adventure book during his mother's nightly reading sessions, Anthony devours the reading materials she picks up on the subject.

"That's the way it is. You have to scramble to find out about it," she said.

The diagnosis has not only changed the Jacoby Creek Elementary School student, it's altered his mother's. The Arcata High School art teacher sees her mission as educational.

Bown-Crawford started a parent's diabetes support group in November. She's also trying to secure a state grant aimed at funding an on-line, centralized diabetes resource network.

When she's not living up to her civic duty, she's being a mom to two growing boys. This puts her on the prowl for healthy but filling snacks. This is where it helps to live in an area that prides itself on a variety of health food stores.

"At the heart of it, (Anthony will) be healthier on all levels, and we will be as a family," she said, noticing her boys don't beg for sweets like they used to for the most part.

"Can I have my soda of the week?" he asked his mother at home one evening after school. "I think you had it," she said, demonstrating the art of negotiation.

Recognizing how watching television can spur snacking, the Bown-Crawford household stores theirs in the closet but wheels it out for movies or Star Trek.

DIABETES UPDATE

A scientific panel has decided in frustration to recommend the continued use of Rezulin by type 2 diabetes patients, The Associated Press reported this past weekend. The controversial drug represents one of many medications a patient can take for the condition, but it's also the most scrutinized.

The Food and Drug Administration has linked Rezulin to 38 of 43 cases of acute liver failure, with 28 of the patients dying from the ailment.

But the panel determined its benefits outweigh its consequences to those patients who cannot adequately control their disease with other, less risky therapies and urged the FDA not to ban it until further study.

The FDA will also wrestle with approving a test that provides the first continuous measurements of patients' glucose levels, The AP reported.

The blood sugar monitoring system by MiniMed Inc. includes a sensor to be implanted just under a diabetic's skin, giving doctors a snapshot look at their patients' health.

To gauge a treatment's effectiveness, diabetics currently prick their fingers several times a day to perform blood tests.

In another related breakthrough, Bayer announced a week ago its intention to place on the market a diabetic blood testing device designed to make the test more convenient, a national health report indicated. The device measures the glucose level with 10-strip cartridges, so a user won't have to reload new strips for each test.


PHOTO CREDITS:

1. Blindness is one complication of diabetes, a disease affecting an estimaed 16 million Americans. It's especially hard on ethnic groups such as Native Americans and Hispanics. Photo by Brandi Easter

2. Look out Spice Girls. The Pump Girls are singing the praises of their life-saving tool, an insulin pump, and donating the proceeds of their engagements to diabetes awareness programs. The four Southern Californian teenagers have all been diagnosed with type 1 diabetes. Photo courtesy of Pump Girls

3. Ann Bown-Crawford and her son Anthony, who has type 1 diabetes. Photo by Brandi Easter


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