LaJaya Jenkins, a cherubic ten-year-old who loves math and milk chocolate, is having a hard time getting the figures on her blood sugar. It’s a Sunday morning in September, and she is hunched over a glass-top table in her family’s tidy Oakland apartment. The small gray monitor she’s using doesn’t seem to be cooperating. Since being diagnosed in August with “adult-onset” diabetes, LaJaya has had to test her blood sugar six to eight times a day, so she’s well attuned to the various things that can go wrong. She repositions the small paper strip dotted with her blood and pushes a button on the monitor again. “Error,” she says softly a moment later.
“Clean your hands,” calls her mother, Lavinia Jenkins, from the kitchen where she’s boiling water for instant oatmeal and finishing up a batch of bacon LaJaya started frying ten minutes ago. Lavinia, 29, hears every word her three children say even around corners or through walls. “My hands are clean, Mama,” counters LaJaya, knowing even as the words pop out that she is lying. Her fingers are still shiny with grease from placing the strips of bacon in the skillet. She slides off the chair, its black vinyl cushion cracked to expose white stuffing, and ambles to the bathroom. She stands about five-foot-three, weighs 172 pounds, and looks like a smaller version of her mother.
LaJaya and her mother prepare a healthy snack. Credits: David Bacon It’s hardly surprising LaJaya’s mouth waters. On average, an American kid sees 10,000 TV commercials every year — the vast majority for junk foods. Credits: David Bacon Lavinia is trying to help her daughter adjust, urging her to walk more, eat healthier, and participate in social activities. But being a role model is hard. Credits: David Bacon LaJaya got a bike for Christmas and has been exercising more. But Egli remains cautious when mulling over how the girl might fare ten years down the road. Credits: David Bacon
LaJaya comes back in seconds, wiping her hands on her star-stamped blue shorts, fingers nimble as she plops back into the chair. Without hesitation she picks up the lancet — a simple, mostly plastic device — and pricks a finger. She touches the bead of blood to a new testing strip and inserts the strip into the monitor, sighing with relief ten seconds later when it reads 104, well within her healthy range of 80 to 130. Next, she plunges a skinny needle into a tiny jar of insulin and sucks up twenty units, then holds it up and flicks it a few times with an index finger to kill off any bubbles before sinking it into her right thigh. She doesn’t flinch. She slowly presses the black plunger and watches the colorless liquid vanish. A box of two hundred orange-capped needles is stashed a few feet away in the hallway closet.
“Sometimes it, like, stings,” LaJaya says afterward. “At night it’s easier.” Occasionally her mother delivers the injections in a pain-free stretch of skin beneath an armpit that’s hard for her daughter to reach on her own, but mostly LaJaya injects herself. “Some mornings be so crazy that you don’t be ready for it,” Lavinia says of her daughter’s daily schedule of tests and shots. “It’s like you be waking up from a dream or something.”
Before LaJaya’s August 2003 diagnosis and eight-day stay at Children’s Hospital in Oakland, she had no idea that the disconcerting symptoms she’d experienced over the past few years had anything to do with an actual illness, much less one that could kill her. She had heard of diabetes — a boy in her class last year had it and injected himself at lunchtime — but LaJaya assumed that her eyes were blurry because she needed glasses, or because she was tired, which seemed lately to be more and more often. In fact, her vision problem was her body’s first warning about diabetes, an imbalance of the body’s blood sugar that damages small blood vessels, including those in the retinas. Diabetes is the leading cause of blindness among adults, instigating as many as 24,000 new cases each year. It also is the sixth leading cause of death in the United States; its complications claim 200,000 lives annually.
LaJaya’s blurry vision and dizziness came well in advance of her diagnosis. Such prediabetes, where the blood sugar is elevated and other risk factors are present but the disease itself hasn’t fully developed, can last for several years. And not everyone with prediabetes acquires the full-blown disease — weight loss and exercise can prevent or delay its onset by lowering a body’s blood-sugar level.
So LaJaya didn’t know why she got dizzy when she stood up, or why she was so thirsty all the time. She certainly didn’t think it had anything to do with being overweight. She knew she was big, sure, but when she looked around she saw plenty of big people: her mother, her mother’s fiancé, her fifth-grade teacher. Being large just seemed normal.
Lavinia wishes that her daughter’s primary-care physician, whom LaJaya has seen annually since birth, had warned them about the consequences of childhood weight gain. The doctor always said LaJaya needed to lose weight — the mother concedes that she could, too — but he never mentioned the risk of diabetes or tested his young patient for it, Lavinia complains. If he’d been better informed he might have; blacks and Latinos are genetically more likely than whites to develop diabetes. Researchers haven’t been able to pinpoint why, but research carried out by University of Southern California professor Michael Goran suggests that blacks are more likely than whites to carry a group of key genetic markers responsible for increased insulin resistance. According to the Centers for Disease Control, 11.4 percent of African-American adults twenty years and older are diabetic, compared to 8.4 percent of whites, and 8.7 percent of all adults in the United States. And the prevalence of Type 2 diabetes among Latinos is 1.5 times higher than among non-Latino whites. Statistics have not been compiled for minors — which is perhaps why the possibility of LaJaya being diabetic didn’t immediately occur to her doctor.
“‘Lose weight, lose weight,'” Lavinia recalls. “That’s all he ever said.”
Americans today are being told to lose weight with increasing urgency. The CDC released a report in early March stating that obesity will soon surpass smoking as the nation’s number one cause of preventable death. More than 60 percent of the adult population is overweight, with half of those medically defined as obese. The body mass index, a calculation of weight in relation to height, has replaced the old standard height- and weight-range charts as the best method of determining if a person is overweight. LaJaya’s body mass index hovers around thirty; the CDC considers a child her age to be overweight with a value higher than nineteen. In the general adult population, anything above 25 is considered overweight, and higher than thirty is obese. Some school districts have even proposed taking such measurements to pinpoint at-risk kids.
African-American and Latino communities also face particularly high rates of obesity. The California Center for Public Health Advocacy published a report in 2002 showing that 29 percent of black and 34 percent of Latino children and teens in California are overweight, compared to 20 percent of their white counterparts. So not only do these groups bear a greater genetic risk of developing diabetes, but also a greater dietary risk.
For years, the drive behind telling young people to lose weight has been more social and aesthetic than medical. Judy Blume’s perennial best-seller for young adults, Blubber, about an overweight girl’s horrific hazing by classmates, paints a picture almost any child has witnessed firsthand. Parents know it as well as kids do — overweight kids are teased, picked last in gym class, and made the class clown if they’re accepted at all. But it has become dangerously clear that being overweight has far grimmer consequences than being picked on. After all, obesity is the biggest risk factor for developing diabetes. But it has become harder to fight in a world where fast food trumps the food pyramid, advertisers spend billions of dollars to get people to eat fatty snacks, and sixteen million Americans now have Type 2 diabetes.
The burning question is, why now? In 1997, 878,000 new cases of diabetes were diagnosed. In 2003, the figure rose to 1.3 million. At this rate, experts predict that one in three people born after 2000 will develop diabetes in their lifetimes. As more and more children are diagnosed with Type 2 or so-called “adult-onset” diabetes, the much less prevalent form commonly called “juvenile diabetes,” Type 1 diabetes, may need a new nickname. A decade ago, no more than 4 percent of all new diabetes diagnoses at Children’s Hospital were Type 2. Today, it’s about 25 percent, and doctors expect this to rise.
When children and teenagers began to be diagnosed with Type 2 diabetes ten years ago, it was comparable to seeing arthritis in twelve-year-olds — almost unimaginable. “Whatever American kids are doing is making them diabetic at sixteen instead of at 45,” says Dr. Mark Hellerstein, director of the San Francisco General Hospital diabetes clinic. “It’s one of the big stories of the millennium.”
Lavinia Jenkins is trying to help her daughter adjust to diabetes, pushing her to walk more, eat a healthier diet, and participate in social activities such as Sisters of Tomorrow, a club for young black girls. “Exercise is like insulin,” she tells LaJaya again and again. But she can’t watch her daughter every moment of the day — and being a role model is hard, too. After all, Lavinia isn’t trying to lose weight herself — she’s just trying to keep her family going on the monthly disability checks she collects for injuries sustained in a car accident ten years ago.
While diabetic adults can at least theoretically manage a strict regime of diet and exercise, the road to well-being is much tougher for moody adolescents. “We’re essentially starting from ground zero, borrowing what has worked in adults and trying to apply it to kids,” says Dr. Catherine Egli of Children’s Hospital, LaJaya’s new doctor. “We just had to go, ‘Okay, let’s see what we can do.’ … The psychosocial issues are what make it particularly difficult. They’re already a group of kids who’ve been ostracized and discriminated against for being overweight. I’ve had kids who’ve ended up going to home schooling because they’ve been ostracized so much at school.”
After her Sunday morning injection, LaJaya packs up her clear plastic diabetes kit, which is stuffed with syringes, several vials of insulin, and brown bottles of pills. She then plops back down at the table and picks at a few strips of bacon, a slice of toast, and a bowl of instant apple-cinnamon oatmeal topped with a melting pat of butter. She sips from a can of Diet Maxx cola, cases of which Lavinia stores in her bedroom closet, while lamenting that she used to love juice, drinking cup after cup. Juice — pure sugar pumped right into the bloodstream — is the first thing doctors tell diabetics to eliminate.
“Sometimes my sister’s hair hurts, but her shots don’t hurt,” says four-year-old Kiara, who sits beside LaJaya at the table. Kiara tugs gently on one of LaJaya’s dozen braids, tightly woven into her shoulder-length hair last night by Lavinia over the course of three painful hours. They’re capped with acorn-sized beads and clatter as she moves. Kiara is LaJaya’s half-sister and the daughter of Lavinia’s live-in fiancé, Antoine. She’s both quieter and more energetic than LaJaya but has the same alarmingly plump frame and cherubic features. She likes to sing and hug and kiss her sister, who in turn likes to give directions. “My nose,” LaJaya will say, and Kiara will obediently plant a giggly kiss there. “My left cheek.”
The girls’ half-brother, Kenny — each has a different father — soon wakes up. The skinny eight-year-old downs a bowl of oatmeal and rattles the screen door as he bolts outside to play with their next-door neighbors. After breakfast, Lavinia’s first cousin stops by with her sullen teenage daughter in tow. Friends and family often come to have their hair braided, a job Lavinia eagerly takes on to supplement her checks. The women hug and settle in on the black velour couch in the living room, talking nonstop while LaJaya, Kiara, and their cousin watch TV.
Seven years ago, Lavinia moved her family to their Cherry Street housing project in what she calls “deep East Oakland,” just blocks away from where she grew up. She has been on a list for public housing in Vallejo and Livermore for more than two years, and can’t wait to get out. A purple can of Raid sits on top of the refrigerator, testament to the roaches she can’t get rid of. Green and white patches of paint show through the cream-colored hallway walls. Lavinia talks about how the neighborhood is getting worse and her cousin “uh-huhs” without moving her head of short, frantic hair, into which Lavinia is weaving foot-long extensions.
Lavinia so often complained to police about people dealing drugs on their street or smoking dope in the driveway of their four-unit apartment building that the dealers finally moved elsewhere. But Kenny, whose father was a heroin addict, still finds bundles of dope here and there along the street, and Lavinia still occasionally sees people shooting up around back of her building. She hopes that by this time next year, she and her family will be settled into a new place. “Any place with decent people,” she says.
LaJaya and her second cousin watch the Nickelodeon network all morning, which seems largely to feature commercials advertising candy and fast food. When an ad for a chocolate fondue set dances across the screen, LaJaya leans forward. “Ooooh!” she exhales, entranced. “Look at that!”
“Enjoy that chocolate now, girl, because this is the closest you’re going to get to it,” Lavinia says with a laugh. LaJaya’s lips, slick with the clear lipgloss she rolls on every few hours, squeeze into a small, wistful smile.
It’s hardly surprising that LaJaya’s mouth waters. On average, according to author Kelly Brownell, an American kid sees ten thousand television commercials every year — the vast majority for junk foods. The advertising budget for soft drinks alone in 1998 was $115.5 million, according to Brownell’s 2003 book Food Fight. The budget for the National Cancer Institute’s “Five a Day” campaign, geared toward getting people to eat more fruits and vegetables? $1 million. Even the most health-zealous parents or schools are up against great odds when it comes to counteracting such advertising. And in most neighborhoods, buying fresh fruit entails walking past several fast-food restaurants and convenience stores, and spending more money. Most people simply don’t bother to seek it out. A study in the journal Cancer showed that french fries account for one-fourth of all vegetables eaten in the United States.
At noon Lavinia sends LaJaya off to the windowless Food King grocery store a few blocks away with her food-stamp card. Her second cousin, a lanky, pretty fifteen-year-old whom LaJaya seems to revere, comes along. She gripes about the long walk.
“It’s only like ten minutes,” LaJaya replies. “I love walking. It’s my favorite thing to do.” Since August, she’s been trying daily to exercise — next to obesity, inactivity is the second biggest factor influencing diabetes.
“Do you get to eat snacks during school?” her cousin asks.
LaJaya says yes and her cousin sighs.
“You’re lucky. A girl in my class has diabetes and she eats chips all the time, in class, whenever she wants. You-all are lucky.”
“I take bags of those little carrots or that green stuff — celery — with peanut butter,” LaJaya says, closing her eyes dreamily for a flash. “Mmmm, I love that.”
There’s a line at the supermarket’s deli counter, but no one says anything when a beautiful black woman cuts in, dressed in a revealing blouse, miniskirt, pantyhose, and towering heels. LaJaya and her cousin stare, at first in annoyance but then in pure admiration. Most girls who acquire Type 2 diabetes develop it in tandem with the onset of puberty, but LaJaya hasn’t yet crossed that threshold. At the counter she orders two dollars’ worth of dry salami and slides the food-stamp card across the high counter. The girls pick out some apples at the small produce department and use the card again at checkout. On the way home they stop at a convenience store and scrounge up enough cash between them to buy spicy pork rinds and microwaved beef burritos — “it’s like vegetables,” LaJaya opines — which they eat when they get home, along with a tangerine. For lunch, Lavinia makes herself a sandwich of white bread, salami, and spiral Dorito chips, crunching on it slowly during her short hiatus from braiding. LaJaya eats much better than she used to, Lavinia says. They all do. Homemade french fries used to be standard fare, Lavinia says, adding, “McDonald’s fries are good for you compared to the ones we used to make.” Now the Jenkinses bake, broil, grill, and try to eat less of everything.
“I don’t even trip off fried food anymore,” LaJaya declares.
Diabetic children aren’t typically given a specific diet to follow. Experts say that teaching healthy eating, and not necessarily instructing kids to eliminate every last chip or cookie, is the most effective approach. While some diabetics rely on “carb counting” — eating a certain number of carbohydrates depending on a blood-sugar reading — most just try to stick to well-balanced diets.
LaJaya’s doctor calls diabetes a family disease; to treat it, the whole family must be willing to make lifestyle changes. Having the support of a healthy family and community around them is one of the most effective ways for diabetic children to make great strides. But all too often — even when another immediate family member has diabetes — Egli runs up against roadblocks. “You think having other family members with Type 2 would make it easier, but sometimes people have a fatalistic attitude,” the physician says. “I’ve seen kids with parents who’ve died from it, and they have a tendency to go into denial, like, ‘There’s nothing we can do about it.’ It’s so frustrating and sad, because we know there are things they can do.”
When a nine-year-old Type 2 diabetic came in with her family for an appointment recently, Egli focused her attention on the Latino girl’s five- and eleven-year-old sisters as well. Like their sister, both were overweight, though they’d previously tested negative for diabetes. The doctor lifted their hair to peek at the backs of their necks. The patches of dark, velvety skin she saw were a sign of insulin resistance, a precursor to diabetes.
The nine-year-old’s blood sugar had averaged in the high two hundreds over the few months since her last visit, more than one hundred points above what it should have been. When she’s with her divorced dad on the weekends, she admitted, he takes the girls to McDonald’s and they order off the Extra Value Meal menu. “The Happy Meals don’t seem big enough,” her father said with a shrug.
“It’s up to you guys,” Egli told the family as she left the room. “It’s up to you.”
But despite the warning that diabetes may soon come knocking, the girls who aren’t yet diabetic aren’t likely to change their behavior. And sadly, life may be very hard for their diabetic sister.
It can’t be said enough that diabetes is largely avoidable. While tremendous focus in the past has been placed on finding the best treatments and a cure for Type 1 diabetes, Type 2 has crept up and taken developed nations by storm. Worldwide, 300 million people are expected to acquire the disease by 2025, up from 135 million in 1995. These are appalling numbers for a disease that could be prevented in the vast majority of cases through a healthy diet and regular exercise. A common refrain among doctors is that genes may load the cannon, but lack of exercise and excessive weight fire it. Although Lavinia Jenkins says she was stunned when her daughter was diagnosed, she shouldn’t have been surprised. Lavinia’s mother acquired Type 2 diabetes in adulthood, and Lavinia’s grandfather and aunt were diabetic as well.
Egli believes strongly in the power of behavioral modification. Studies have shown that diabetes can be controlled, if not cured, with a healthy diet and exercise, to the point that those things alone may be the only prescription a diabetic needs. For a while, anyway. Complications inevitably arise over time — blindness; extreme complications in pregnancy; and bladder, kidney, and cardiac problems — some of which are easier to live with than others. Egli tries hard to believe her patients’ health will improve, but what she sees day in and day out doesn’t make her optimistic.
A trip to Howard Elementary School with LaJaya is an ample demonstration of what Egli is up against. Half the kids line up in the small converted gymnasium for a hot lunch, consisting of a hot main course such as a prepackaged burrito, a piece of fruit, and a carton of low-fat milk. The Oakland School District was only the second in California to ban soda from vending machines in 2002 — resulting in a $500,000 drop in sales districtwide — but the kids still have plenty of sugar on hand. LaJaya pulls from her fuchsia lunch sack a salami and mayonnaise sandwich on white bread, a small bag of Cool Ranch Doritos, a fruit roll-up, and a diet Dr. Pepper. It’s a nutritionist’s dream compared to what her classmates swallow. One girl’s lunch consists entirely of a four-serving-size package of Sour Gummi Worms and some potato chips. Another girl downs a hefty helping of Cheetos and a Coke.
“Fix the problem, not the blame!” commands a poster hanging in LaJaya’s fifth-grade classroom. If only it were so easy. One in every three American children between the ages of six and nineteen is now overweight — twenty years ago, it was one in nine. But it seems schools are doing little to address the problem. Expelling vending machines is an obvious start, but even that is a radical choice not many schools can afford. One thing they can do is encourage physical activity by hiring gym teachers and requiring students to attend PE. Apart from the ten minutes she spent outside before the morning school bell rang, and the walk to and from the cafeteria, LaJaya hasn’t had a chance to move her body all day. And she won’t until the school bell rings. Come spring, her class will have physical education every Friday for an hour, but that’s it. Her teacher, Viva Sexton, will conduct the classes herself, since the school has no physical education teachers on staff. Sexton seems to lament the kids’ lack of run-around time, but when recess rolls around after lunch, a dozen of her students remain in the room, sitting antsily at their desks, reading books or writing on sheets of blue-ruled paper. These kids’ classroom infractions have kept them inside. LaJaya, who was rude to a classmate last week, is among them. She is one of the tallest kids in the class, and her frame dwarfs her small wooden desk. When she sits, her knees splay out to the side.
LaJaya shoved a mini JanSport backpack in the desk at the beginning of the day; she takes it with her everywhere. Inside are two vials of FreeStyle-brand test strips, white with black polka dots; a blue lancing device; a pair of white albuterol relief inhalers for the asthma she’s had since infancy; a pink steroid inhaler called Flovent that she inhales twice a day; an electronic blood-sugar tester; and a red plastic Glucagon Emergency Kit, which she’s never used. “It’s if I can’t move,” she explains later. She says the kit includes a pill she’s supposed to dissolve in a vial of special liquid, after which she’s to drip the mixture onto her back gums. “Glugon … gluglugon,” she says, laughing because she doesn’t know how to pronounce it. She also doesn’t know how to use it properly: The glucagon, a hormone made in the pancreas, like insulin, must be mixed with glycerin and then injected. It’s to be used in case of extremely low blood sugar, and there’s little chance LaJaya would be lucid enough to deliver the shot herself.
LaJaya is quiet but merely shrugs when asked if she’s nervous on the way to her first follow-up visit two months after being diagnosed. Children’s Hospital treats a diverse population, from the children of wealthy professionals living in the nearby Oakland Hills to poor children such as LaJaya, who has to go there to pick up new needles because her mother can’t afford to buy them. Most children and teenagers turning up with Type 2 diabetes tend to fall in the latter group, and are more difficult to treat. Egli’s patients and their parents often miss appointments, “forget” to stick to their eating plans, and say they don’t know how or when to exercise. LaJaya, however, is controlling her blood sugar much better than most of her peers, despite the occasional burritos and pork rinds.
When the hospital’s automated entrance doors whoosh shut behind her, a wide smile spreads across her face. The outpatient building is situated along noisy Martin Luther King Jr. Way a block from a freeway onramp, but the lobby of the hospital seems like a different world. It’s a wondrous place, one LaJaya wishes her bedroom resembled, although she might keep her posters of Beyoncé and 50 Cent. Sky-high bamboo and papier-mâché palm trees many times her height and enormous, colored butterflies soar into the sunny loft-like space. LaJaya inhales sharply when she sees the gaggle of giant stuffed animals behind the reception desk. “Ooh, I love those!” she says, skipping over for a closer look. “Kathy gave me a teddy bear when I was in the hospital.” She’s fond of Kathy Love, the nurse educator who took LaJaya and her mother through diabetes boot camp during her hospitalization back in August. Her mother is fond of Love, too. “She’s my angel,” Lavinia says. “God sent her to me.”
Love gave LaJaya a 326-page Pink Panther diabetes coloring book packed with practical information, including a drawing of the Pink Panther’s gangly body marked with the best sites for giving insulin injections. It’s a friendly way to deliver information that many kids — and their parents — can find jarring. Each chapter ends with a glossary of terms: The list in the chapter on long-term complications includes “edema” (collection of fluid under the skin), “necrobiosis” (yellow fatty deposits that can occur over the lower legs), and “nephropathy” (a generic name for kidney disease). This tenth edition of the book was printed in 2002 and is the first to include a chapter on Type 2 diabetes. Its author, Dr. Peter Chase, is already working on the next edition, which will include an expanded Type 2 section.
The echo of small children’s laughter floats up from the lobby to the fifth-floor endocrinology department, where LaJaya checks in and hands over the two blood-sugar monitors she’s been using so the data can be downloaded and arranged in a chart that will show her progress. It’s LaJaya’s first visit with Egli and Love since her diagnosis, and she has a lot to do. She steps cautiously onto the scale and smiles shyly when she finds out she’s lost two pounds. “I thought my jeans were loose,” she says later, hooking her chubby fingers through a loop on the waistband.
After weigh-in, she has two blood-sugar tests taken (the first didn’t work) and then hops up on the examining table to have her blood pressure measured. She hates this part even more than her insulin injections, and when the black Velcro band squeezes her left arm she scrunches up her face and winces like she’s going to cry, her cheeks as red as her shirt. Lavinia watches from the open doorway, her hazel eyes soft, her voice gentle as she tries to comfort her daughter. When it’s over, they go back to the waiting room and fill out a pink intake form while they wait to be seen.
“‘Sweaty? Shaky? Hungry?'” LaJaya reads slowly to her mom. “Nuh-uh.” She checks two boxes to indicate the only symptoms she has: sleepiness and confusion. What “confused” means is unclear, and Lavinia doesn’t know either, so LaJaya just checks it. The sleepiness part is easier; she sleeps very heavily.
“Nub … nubedness,” LaJaya reads softly, tripping on the word.
“Numbness,” Lavinia corrects her. “Like when you can’t feel anything, like when your legs fall asleep.”
“Numbedness,” LaJaya says, considering it as her eyes roam the room. “Nope.”
LaJaya’s diabetic aunt had a leg amputated. Neuropathy, or extreme numbness or pain in the extremities, is a common diabetic complication. Approximately 82,000 Americans had lower-extremity amputations caused by diabetes in 2001.
On her way to the examining room to meet with Love, LaJaya eyes a stack of bright-orange fliers in a bin along the hallway and grabs a couple. They list the various kinds of candy she can eat for Halloween, and her mouth drops open in surprise. She anticipated a sad Halloween filled with reminders that she was different from the other kids, but instead it turns out she can have small amounts of everything from Starburst fruit chews to Reese’s Peanut Butter Cups if she is careful.
Love, a petite, energetic woman with hip glasses and a short dark bob, enters the room with LaJaya’s chart in hand and immediately launches into congratulations over the girl’s excellent progress. Lavinia blushes, overjoyed, but LaJaya, so happy just a moment earlier, merely nods and gazes at the white linoleum tiled floor. The misery on her face isn’t lost on Love.
“What’s wrong?” Love asks softly, crouching down to be at eye level with LaJaya. “Why are you sad?” But the girl clams up, and merely shrugs.
Lavinia tells Love that LaJaya has been acting grumpy and teary lately, shutting herself in her bedroom and complaining all the time. It’s something Love hears often, she says later, a common reaction from kids with diabetes. It is, after all, a life sentence. No matter how well it’s controlled, it will always have to be kept under control the next day, and the next, and the one after that. Even for diabetics who don’t require insulin, there’s always the chance that the need for injections lies just around the bend. Always that uncertainty, that fear.
After Love leaves, LaJaya immediately comes alive again, grabbing the orange flier and reading it off to her mom.
“I can have four Gummi Bears!” she says. “A snack-size Snickers!”
Lavinia nods her head. “And I thought this Halloween I’d have to keep you away from the candy,” she says. “You are lucky we found this.”
When Dr. Egli, tall with straw-blond hair and a harried air, arrives ten minutes later, she tells LaJaya she’s doing so well that she can lower her insulin intake and boost the dosage of her oral medication, Metformin. Metformin is a glucose regulator that has the added benefit of helping overweight diabetics shed weight more easily. But Lavinia grows anxious at the thought of changing any part of the regimen.
“I don’t want to mess with it,” she tells Egli, frowning. “I’m just glad I’m doing something right,” Lavinia repeats again and again. “So glad. I’ve been so scared.”
LaJaya swings her jean-clad legs off the edge of the examining table, a blank expression on her face as she follows the conversation. Egli notices and, like Love, attempts to find out what’s going on inside her head, but the girl gives nothing away. Later, when asked what she was thinking in the examining room, she nibbles her lower lip and shrugs. Finally, she says, “I’m worried about the future … because I don’t know what’s going to happen to me.”
No one knows what’s going to happen to the LaJayas of the world because doctors have never before seen a generation of children suffering from Type 2 diabetes. The best-case scenario, as posed by best-selling author Dr. Andrew Weil in a recent conversation with Larry King on the epidemic, is that a diabetic will go into what Weil considers complete remission and no longer require medication of any kind. “I’ve seen many people who have lost weight, started an exercise program, began eating the right kind of diet, and the diabetes has disappeared,” Weil told King. “It will come back if you gain the weight, stop exercising, and eat the wrong foods. So I think it is absolutely possible for Type 2 diabetes to disappear by all clinical measures.”
In fact, doctors possess little good information about what kids who acquire Type 2 diabetes will experience in five, ten, or twenty years. Egli says it’s impossible to predict where they’ll end up, but she imagines their paths will mimic those of adult diabetics. “When they’re diagnosed, they may already have hypertension, high blood pressure, and may also be at risk for heart attack and stroke,” she says. “We can anticipate that if kids are diagnosed at nine or ten, by the time they’re young adults they’ll be having complications we typically see in older adults.” Within five to ten years, diabetics with poorly controlled blood-sugar levels often begin to experience noticeable damage to their eyes, kidneys, and extremities. “We’ve had young adults who have ended up with amputations,” Egli says.
Recent advancements suggest longer, healthier lives for Type 1 diabetics diagnosed today. But Egli and her peers don’t yet know how Type 2 will play out when diagnosed in childhood. Recruiting pediatric subjects for Type 2 studies is very difficult, so not many have been done yet. And it’s hard to track the course of the disease from childhood to adulthood, because once patients turn eighteen they’re out of the children’s hospital system and are no longer followed. But some early research suggests diabetes may progress more rapidly in kids than in adults.
A 2002 Canadian study of Native Americans diagnosed with Type 2 diabetes before adulthood points to a dire future. Of 51 patients, ranging at the time of the study in age from eighteen to 33, seven died, three were on dialysis, one became blind at age 26, one had a toe amputation, and only 35 of 56 pregnancies resulted in live births.
Some diabetic kids see the horrific end result of the disease up close but still have a hard time creating a better path for themselves.
“We’ve seen two teenage girls in the past year who have lost their mothers to end-stage renal disease from diabetes,” Egli says. “That’s the worst case, I think. Obviously you want to hope these girls can make changes in their own lives, but it takes so much effort to stay with it day in and day out.”
But it’s not just these girls who are unwilling to believe they may end up the same way.
“I think our whole society is in denial,” Egli says. “We’re not recognizing how the sheer numbers are accelerating. It’s going to touch all of us, and the whole impact socioeconomically will be astronomical.”
Six months after her October visit to Children’s Hospital, LaJaya, now eleven, seems to be well on her way to becoming a diabetes success story. Lavinia slowly weaned her daughter off her daily insulin shots after the New Year. LaJaya beams when talking about giving up the injections. “When I got diabetes, I thought I was going to be taking the shots forever,” she sighs. “I can’t believe it!” Her attitude has changed noticeably; she’s no longer moody or sleepy, and has energy to spare. And although she says the scale hasn’t budged, she looks leaner. She got a bike for Christmas and has been exercising more. But Egli remains cautious when mulling over how LaJaya might fare ten years down the road, because diabetes “isn’t something you can take care of now and then forget about.”
Lavinia seems to understand this but worries that her daughter does not. She complains that where LaJaya was on the ball with her insulin injections, the girl must be constantly reminded now to take her pills. “She’s getting lazy,” says Lavinia, perched on the couch beside her daughter.
LaJaya bites her lower lip and rolls her eyes. “I’m not lazy, Ma. It’s just like I’m normal again, so sometimes I forget.”
