Thanks to advancements, Type 1 diabetics can lead normal, healthy lives.
By Lynn R. Parks | Photographs by Carolyn Watson
From the Winter 2020 issue
It was nearly a decade ago. But Haley Archambault remembers clearly how she felt when told she had diabetes.
“It was really scary,” says the 16-year-old Lewes-area resident. “Every 7-year-old would be scared.”
Haley’s mom, Amanda, had taken her to a pediatrician for treatment of what Amanda thought was a urinary tract infection. Haley had been drinking a lot of water and going to the bathroom frequently, and also had complained of headaches and that her stomach hurt.
“I told her that all she would need to do was pee in a cup, that they would give her an antibiotic and she would be good,” Amanda recalls. “But when they tested her urine, there were high levels of glucose. So they pricked her finger for blood, and when the nurse handed the glucometer to the doctor, he looked at me like, ‘OK, Mom, get ready.’”
Haley’s family took her immediately to Nemours/Alfred I. duPont Hospital for Children near Wilmington. Her medical team there confirmed that Haley had Type 1 diabetes, explained how the disease works and taught her how to manage it.
By the end of her four-day stay at the hospital, Haley’s fears were vanishing. And she was able to administer her own insulin injections.
“I was really relieved when I found out what would happen with this disease and how we could fix it,” Haley says.
“It’s all about education,” her mom adds. “The hospital won’t let families go home until they understand diabetes and can handle what’s going on.”
Tina Trout is a diabetes clinical nurse specialist for Beebe Healthcare. She sees patients in the medical system’s Lewes hospital as well as in outpatient settings and guides them in managing their blood glucose levels. She agrees with Amanda Archambault that knowledge is the key to handling the disorder.
“I always say that education is the least costly of all treatment,” Tina says. “People can manage diabetes if they know how. It all depends on how they perceive their illness, whether they take it seriously or not.”
“Diabetes certainly is a life-changing diagnosis,” says Randy Burton, of Lewes. He learned five years ago, at the age of 51, that he had Type 1 — unusual in that Type 1 often first appears in childhood or adolescence. “But if you commit to taking good care of yourself, and you get on board with the best options of care that are out there, it doesn’t need to be a negative sentence that you’re being burdened with.”
The pancreas rules
Type 1 diabetes (previously called juvenile diabetes) occurs when the beta cells in the pancreas that produce insulin are destroyed. Insulin is a hormone that carries glucose from the bloodstream to cells throughout the body, giving them the energy they need to function.
The underlying cause of the cell destruction isn’t always understood: In Haley’s case, doctors think that she got an illness, perhaps something as innocuous as a cold, that caused an autoimmune reaction in her pancreas.
Berlin, Md., resident Danielle Jacek, who until last month lived in Millville and is one of Trout’s patients, was diagnosed with stage IV neuroblastoma (cancer of the nerve tissue) when she was 18 months old. In her case, doctors think that the cancer, from which she had recovered by age 4, damaged her pancreas, making it unable to produce enough insulin.
All people who have Type 1 diabetes have to take insulin. Without it, “they will die,” Tina says.
In contrast, not everyone who has Type 2 diabetes requires insulin. People with that disease have a fully functioning pancreas, but their bodies aren’t able to properly use the insulin it produces. While there can be a genetic tendency toward Type 2, it is associated with obesity and lack of exercise.
The Centers for Disease Control and Prevention reports that in 2018 (the most recent year for which statistics are available), nearly 1.6 million people in the United States had Type 1 diabetes, 187,000 of them younger than 20. The Type 1 population accounts for just a little more than 5 percent of the total number of diabetes cases, estimated at 34.2 million.
According to the Delaware Department of Health and Human Services, the number of adults in the state with diabetes of either type is 91,300. Of those, around 5 percent have Type 1. (The state does not have data on children with Type 1.) “When you learn you have Type 1, you find out that there are a lot of people in the community that have it as well,” says Matt DiSabatino, of Lewes, who was diagnosed at age 29. “You start to network and establish sort of a relationship, because we are all kind of supporting each other.”
Keeping the ‘woolly mammoth’ at bay
Logan Derrickson, a senior at Sussex Academy and a Milton-area resident, was diagnosed with Type 1 when he was 8. His mom, Gina, recognized the symptoms because her mother, who died in 2009, had the same illness.
“When my son started getting up in the middle of the night to use the bathroom, which he hadn’t done since he was a toddler, and he started drinking more water, I just had a gut feeling,” Gina recalls. “So I took him to the doctor and she gave him a test immediately.” The diagnosis, she adds, “was gut-wrenching, just knowing what he would have to go through the rest of his life.”
Like Haley, Logan was referred to Nemours/duPont, where he spent five days. His team included an endocrinologist (a specialist in the system that secretes hormones such as insulin), a nutritionist and a social worker — “it was a whole process,” Gina says. She and Logan still turn to the hospital when they have questions: “We get plenty of support from A.I.,” Gina says.
Haley and Logan each wears an insulin pump, which provides a continuous flow of insulin into their bodies and allows them to avoid regular injections of the hormone. They can adjust the insulin flow (through a port) according to what they have eaten and how much exercise they’ve had, both of which can affect glucose levels. There are additional variables, though, that make regulating glucose levels more complicated than just adding up a meal’s carbohydrates (which break down into sugar).
“You can eat the same thing five days in a row, have everything calculated perfectly, and know how much insulin you need, and still have variations in your blood sugar,” Amanda Archambault says. “If you’re sick, or if you’re really emotional, or excited — all of that affects your blood sugar.”
Randy Burton, who also wears an insulin pump, explains that “sugar is produced in your body according to the fight-or-flight rule. Your body says, ‘I’m scared, I’m stressed,’ and translates that to ‘I’m going to need to run from this woolly mammoth. I need to produce sugar to support my muscles so that as I run, I have enough energy to keep me running.’ Today, we don’t have woolly mammoths chasing after us anymore. But we have all of the other stresses of modern life.
“When I have really high-stress days, those are the days that managing my sugar is the most difficult. My body wants to keep sugar levels high, because it thinks that a woolly mammoth is coming after me.”
Taking control
In addition to insulin pumps, Randy and Haley also wear continuous glucose monitors that regularly check sugar levels in interstitial fluid, the substance that carries glucose to the body’s cells. The monitor then sends reports to cellphone apps (the patients’ as well as those of other people, if they want; see “Monitoring Critical Data,” at left).
If the numbers are too high or too low, the patient can adjust the flow of the pump to compensate. High sugar levels can lead to diabetic ketoacidosis (DKA), symptoms of which include difficulty breathing, weakness and sometimes loss of consciousness. Low sugar levels can lead to hypoglycemia, indicated by trouble talking, confusion and seizures. Both conditions, if not treated, can result in death.
Like Randy and Haley, Danielle Jacek also wears a glucose monitor and an insulin pump. Danielle says that getting a monitor is atop her list of tips for diabetics.
Matt DiSabatino agrees. “It gives you so much more awareness and control,” he says. “You are kind of ahead of the highs and lows, which helps a lot.”
But Logan, who developed DKA once when he was in middle school and ended up in the emergency room, still prefers to check his glucose levels the old-fashioned way: drawing out a drop of blood by pricking his finger. He does that up to 10 times a day, says his mother.
“Having to do that puts a lot of responsibility on him,” Gina Derrickson adds. “As a parent, I would love for him to wear the continuous glucose monitor. But he says that the pump is inserted in him, and he just does not want a second insertion.”
Like all moms, Gina lives in hope. “Maybe he’ll change his mind,” she says.
Whatever devices Logan uses to manage his diabetes, though, Gina is grateful for them. Until the 1920s, when insulin became available for injection, there was no treatment for the illness. Life expect-ancy after onset was no more than a few months.
“The new technology feels like a godsend,” Gina says. Her mother, Patricia Charles, was in her early 20s when she was diagnosed; though she was able, before the end of her life, to use an insulin pump, “she always had a difficult time.”
“When I look back to being a child with my mother, and the treatments that she had, and then at my son, with the difference in technology and the continuous ongoing improvement, it’s wonderful.”
Matt says he thinks about having diabetes “all the time, only because you have to. But because of the technology, I can live a life that’s almost normal, as far as what I do. I worry about it a lot less, because I know that I have tighter control.”
Turning lemons into …
Matt feels that, because of his illness, he has a greater appreciation for life than he would have otherwise. But he wouldn’t go so far as to say that he’s grateful for being a diabetic. “It’s a pretty tough disease. I would love for a cure to be out there, and I’d get in line along with everybody else.”
Gina Derrickson echoes this sentiment. She has a simple answer when asked if there is any upside to Logan having diabetes: “No, no, and then again — no!”
Her son, who has been on his school’s baseball, golf and cross-country teams, is planning to go to art school out of state after he graduates in the spring. Gina is worried about him leaving home: “Diabetes is a very difficult disease. Even with modern technology, it’s still a difficult disease. You can do a lot to control it, but that doesn’t mean that it’s 100 percent controlled.”
Even so, she’s confident that he has a bright future.
“I feel that Logan can have a happy life,” she says. “He has all the technology to help him. Diabetes will slow him down sometimes, but it won’t stop him.”
Haley, a 10th-grader at Cape Henlopen High School who plays volleyball and basketball, throws shot put and discus on the track team and is in the school chorus, plans to be either a pediatric endocrinologist or a physical therapist. “I know that if I push myself hard enough, I can do anything,” she says.
Danielle, the former Millville resident, started an online marketing business last year. She has lived in Turkey and Madagascar, recently visited Israel and is planning a trip to the Mediterranean.
She also practices yoga. “I’m not very good at it,” she confesses. “But it’s a lot about managing stress. My glucose numbers are really no good if I’m under a lot of stress.”
Matt and his wife, Ali, parents of three children (ages 10, 11 and 12), own the Striper Bites restaurant in Lewes and are partners in two other Lewes eateries, Kindle and Half Full. His work is demanding because “this type of business is unpredictable, and you’re moving around a lot.” To counter that, he likes to go offshore fishing, practices yoga with Ali, and takes the family’s 10-month-old Bernedoodle for long walks.
And Randy owns a construction company, Burton Builders, and is overseeing development of the Mariners’ Retreat community in Lewes. He and his wife, Riki, recently rented a van and drove to the West Coast and back, stopping along the way to visit friends and relatives.
Haley, Danielle, Matt and Randy — like Logan — won’t be stopped by diabetes, they say.
“I can do everything and anything a person without diabetes can do,” Haley says. “I’ve always been interested in singing, playing sports, having fun with my friends. Nothing will stop me from doing all of that.” Her only concern is that people, knowing that she is diabetic, will try to protect her. “But I try not to worry about it.”
“Adventure is my favorite word,” Danielle says. “My own business and traveling wherever I want: That’s the life I’m envisioning.”
Randy says that with care, he is able to lead a normal life. And he feels that his illness has forced him to pay better attention to his well-being than he did before his diagnosis. “I’m in better shape than I was,” he notes. “I am as well as I choose to take care of myself.”
Matt says he uses “being diabetic as a motivator. Whether it’s exercise, being adventurous, or being a good dad, husband and friend, I try to do everything a little better than where I was pre-diabetes. I think it’s put me in a mental place that has given me more strength than maybe I would have had in the past.”