Diabetics fight hidden enemy
Mark Henle/The Arizona Republic
By Judy Nichols
The Arizona Republic
Dec. 8, 2002
Native American health
Slideshow: Pimas fight diabetes Slideshow: Dealing with accidentsFor diabetics like Wood, who is Pima, amputations are always the last resort, and the guillotine is used when the foot or lower leg is badly infected, usually gangrenous, and there is worry the infection may spread and possibly kill the patient.
It is what it sounds like.
"They chop it right off at the ankle," Wood explained.
The foot is severed and the wound left open while the infection is treated. Eventually, the leg is cut to the proper length, the stump sewn shut.
Wood's battle to save his leg had begun in 1996 when he stepped on a cactus spine that went through the sole of his tennis shoe and deep into his foot. He pulled it out, thinking he got it all; but the tiny barb on the end broke off, and the wound began to fester.
Surgeons almost cut off his foot then but were able to take just the middle toe. It was Christmastime and Wood spent it in the hospital.
A year later, again at Christmas, a second infection cost him two more toes. And the third year, it was an infection on the top of his foot. Nothing could be done. That year, at Christmas, they amputated the lower part of his leg.
"I remember thinking, 'Why did it happen to me?' "
A tissue scraping
Up four floors from the operating room at the medical center, Ruben Zepeda, 21, grimaces as Dr. Joy Bunt shoots anesthetic into his healthy left leg.
When it is numb, she uses a scalpel to cut through the skin, the layer of fat and the tough membrane surrounding the muscle. Then she inserts a large needle encased in a metal sheath. As she turns the needle, it scrapes off muscle cells.
Zepeda is Tohono O'odham, closely related to the Pima, from Pisinimo, and everyone is interested in his tissue. He is lean and sensitive to insulin, the opposite of those succumbing to diabetes.
Biochemist Karen Stone takes some for her experiments with insulin conducted down the hall. Barbara Vozarova, a doctor and research fellow from Slovakia who is studying the relationship between diabetes and inflammation, drops some tissue into a small metal bowl dipped in liquid nitrogen.
Clumps of cells freeze into tiny balls and Vozarova places them into vials that will be sent by overnight mail to the Joslin Diabetes Center in Boston. It is this kind of research that shows the risk factors for diabetes, which include being overweight, having a parent with the disease and having high insulin levels in the blood.
Researchers have found that there also is an environmental factor; babies of diabetic mothers have an increased risk that is related to their intrauterine environment. They also have found that kidney complications are increased with high blood pressure.
All these things were learned in Arizona. And they have led to many now-standard treatments: strict management of high blood pressure, better care and control of blood sugar during pregnancy and a new prevention trial program of diet, exercise and medications.
A new diagnosis
Still, the disease moves forward.
Earlier this year, Francis Crosby, 51, felt dizzy when he stood up, so he went to the doctor.
His blood sugar was 234, far higher than the normal 120.
Diagnosis: diabetes.
"It was depressing," said Crosby, of Phoenix, an engineering drafting specialist for the Maricopa County Flood Control District.
But Crosby is controlling his disease through diet and exercise.
"I eat a lot of veggies, and I read all the labels in the grocery store," he said. "It takes a lot longer to shop. And I cycle and walk an hour and a half every other day and half an hour on the off days."
He has lost 20 pounds and reduced his blood sugar to 103.
Looking for arthritis
The National Institutes of Health came to Arizona in the 1960s to see whether arthritis is more common in cold or warm climates, comparing the Pimas with the Blackfeet of Montana.
What researchers found was an epidemic of diabetes.
A formal study in 1965 found the highest rate ever recorded, and researchers began an in-depth analysis of the community. Since then, each tribal member has been given a detailed exam every two years beginning at age 5.
To do its work, the NIH paid for a fifth floor at the Phoenix Indian Medical Center, built in the early 1970s, for its research facility.
More than 100 people, including 30 M.D.s and Ph.D.s, work there, and they conduct clinical investigations and lab-based research in biochemistry and genetics.
Researchers are working on 15 large-scale studies, including one on diabetic kidney disease, one on women who were diabetic during pregnancy and their children, and one on the differences in brain function of overweight people.
They study insulin resistance, how nerves react after meals, and metabolism rates.
Each Friday afternoon, at what they jokingly call the "gray-haired scientist hour," one of the researchers gives a report on his or her latest findings.
"The world owes a great debt to the Pimas for what we have learned through these studies," said Dr. Clifton "Bo" Bogardus III, who heads the facility.
The team is looking toward what may be its most promising finding, one that carries the most hope for improvements: isolating the gene or genes that cause diabetes.
Bogardus' team was the first to locate a span of genes on one chromosome that predict diabetes. The team's work has since been duplicated for several other races: White, Asian and Black.
They also have targeted a span on another chromosome that marks a person for obesity. That, too, has been duplicated in Whites.
They recently met with an international group of scientists from the United States, China, England and France, and are preparing a multimillion-dollar proposal that would pool DNA data from the different groups and look for the specific diabetes gene.
Bogardus said narrowing the span of genes could be done quickly, then the real work would begin to find the actual gene or genes, which could take a couple of years or a decade.
A family connection
Wood learned he was diabetic during his annual firefighter physical in 1988. He was 30 and the third generation to fall victim; his grandparents got diabetes in their 60s, his parents in their 30s.
Wood's father, an athlete who watched what he ate, didn't smoke and didn't drink, had to have dialysis twice a week and eventually died of a heart attack while on the dialysis machine.
Wood likes good times. He likes family reunions, where everyone in his sports-crazy family plays basketball. He likes playing pool and darts. And dancing a country two-step or a fox trot.
He likes to eat. And he has been known to have a few drinks.
But he works hard, too.
When he recovered from his first amputation, he went to work for the U.S. Census Bureau, helping prepare for the 2000 census and later working on cold files, where census workers couldn't get residents to fill out the forms.
"They gave me 70 cases, places where they couldn't get answers," he said.
He was working on his cases on Sept. 11, 2001, when the planes hijacked by terrorists flew into the World Trade Center and the Pentagon. A few days later, he was so depressed that he went with a friend to have a few drinks at a pool hall.
On the way home, he wrecked his truck, scraping his stump.
For several months he doctored it and watched it, thinking it was OK.
And he worked. Sometimes 18 hours a day. Driving, climbing stairs, and walking, walking, walking. He was exhausted, but chalked it up to his caseload.
All the while an infection was festering in the bone of his stump, unknown to Wood, and it was attacking his good leg.
"It looked OK on the outside, but I kept getting sick," he said.
By April, he finally gave in.
"My legs were throbbing, my foot was glowing red. I said, 'Take me to the hospital.'
"I told my surgeon, 'I think I pushed it too far.' They showed me the X-ray, showed me how much tissue had died. I was heartsick."
It would be the guillotine again. And they had to cut off infected bone on his other stump, too.
This time, he would stay in the hospital for three months fighting the infection, three months before they could close up his stump.
"Our upbringing is that we're not supposed to show weakness. But I was depressed, sick; I didn't talk to the nurses."
Memories of injections
Victoria Dawahoya, 35, remembers watching her grandmother inject herself with insulin. And the insulin bottles in the refrigerator.
It seemed everyone in her family had diabetes. Her grandmother. Her grandfather. Her mother. Her father. And her uncles, aunts and cousins.
Her grandmother told her about the big river that used to run through the land the Pimas lived on. She told her how they ate fish and rabbits, and the vegetables and beans they grew. How they were physically active, working on the harvest, dancing, playing sporting games.
She told Dawahoya how the dam had changed everything, taking away the river, the fish, the plants.
And she told Dawahoya to take care, eat well and drink lots of water, because too many of the Pimas were always at the hospital.
"She told us that the size of the chumauth (frybread) we made would be the size our underwear will be," Dawahoya said.
Dramatic change
Dr. Charlton Wilson, associate director of the Phoenix Indian Medical Center, said the increasing level of diabetes over the past 100 years is dramatic, "from a condition that was not apparent to some very bright people . . . to a chronic disease."
"It's a mixture of heredity and environment," Wilson said. "The change from non-existent to widespread is too fast to be only heredity. There has also been a great change in the environment. They have moved from a time with fewer food calories and a more strenuous active daily life to a time of abundance of food calories and a sedentary life."
The appearance of diabetes in young children also has changed the view of the medical community, he said.
"We used to think diabetes was the result of someone not eating right over a long period of time," Wilson said. "We don't lay that same guilt on children. It's not 30 years of not eating right."
Wilson cautions against categorizing blame.
"When you say it's 'just a gene,' it becomes a fault, an error, a mistake." he said. "It becomes a helpless, hopeless issue.
"When you say it's 'just the environment,' you say they should not eat modern food, that they should be hunters, gatherers, go back to their traditional ways, that they've fallen from that which they are supposed to do, that it's a failure.
"Specifically, diabetes is a factor of calories, exercise and insulin sensitivity."
Finding adaptations
Dawahoya developed gestational diabetes with her second pregnancy and had to inject insulin.
"When they told me I was diabetic, all I heard was 'die,' " she said.
She remembers that her son was about the same age she had been when she watched her grandmother give herself injections.
She told him about the Pimas and the dam, but she added her own part of the story: How when she was born there were Golden Arches, that fast food was a way of life for her, supersize portions, bigger cups of soda.
Now she controls her diabetes with diet and a pill that helps her pancreas produce insulin at night.
She has adapted traditional recipes to lessen their fat, like baking frybread. She walks an hour every day. She has lost 20 pounds.
Dawahoya's older brother, Edward "Tony" Allison, 40, found out he was diabetic when he emerged from his alcoholism in 1991.
"After I stopped drinking, I drank a lot of Coke," Allison said. "I wasn't feeling right. I was sleepy, tired, had anxiety."
And his diabetes is now complicated by a second diagnosis of fibromyalgia, a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown.
"I was a runner," Allison said. "Now I get pain from whatever I do." So he meditates, and does tai chi and yoga. When he's up to it, he walks the mall at Arizona Mills.
Allison said the health problems of his tribe are depressing.
"I think about it every day, hearing the life expectancy for men here is 55," he said. "I saw a friend of mine in the mall. . . . He just recently had his toes cut off from diabetes. It seems we're digging our own graves with our teeth."
Standing tall
When Wood first stood on his two new prostheses, he could see the top of the refrigerator, compliments of the man who fitted him for the artificial limbs.
"I was 5-10," Wood said. "I told him to make me 6 feet."
In the morning, when he first puts on his legs, they always hurt a little.
He prefers cowboy boots but wears tennis shoes now because they grip the ground better. He has given up the fancy footwork of the country two-step.
But he still can feel his phantom toes, feel them pushing down as he walks. Sometimes the top of his phantom foot itches, and he has to scratch around on his stump, looking for the corresponding area where a nerve is sending the itch signal to his brain.
Sometimes when he kicks something, he'll instinctively say, "Ouch."
And sometimes when he wakes from dreams where he has legs, he rolls over to get out of bed forgetting they are gone.
Reach the reporter at judy.nichols@arizonarepublic.com or (602) 444-8577.
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