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The new faces of Type 1 diabetes

Fellowship Story Showcase

The new faces of Type 1 diabetes

Picture of Sarah Gantz

This story was produced as part of a larger project led by Sarah Gantz, a participant in the 2019 National Fellowship.

Other stories in this series include:

Racial bias in health care hurts patients. But that can change.

Jace Jarrett, 4, stands on his family’s large couch and peers out the window waiting for his father to come home from work on a
MICHAEL BRYANT / STAFF PHOTOGRAPHER
Monday, April 13, 2020

Kimberley Jarrett tucked her 15-month-old son into his car seat and jumped in beside him as her husband took off for the hospital, driving as fast as he dared.

During the brief trip from their Mount Airy home, Kim dabbed coconut water onto Jace’s tongue. To her shock, it felt like sandpaper, scratchy and bone dry. Julian pulled up to Abington Hospital-Jefferson Health, and Kim rushed into the emergency department with her baby in her arms and her heart in her throat.

Earlier in the week, a pediatrician said Jace’s lethargy, constant demands for a drink, and excessive urination were probably just signs of the flu. But ER nurses discovered that Jace’s blood sugar was nine times normal — coma territory. The diagnosis: type 1 diabetes.

Kim and Julian had no idea what to think.

“We were sitting there, like, ‘What the hell is diabetes?’ ” she recalled. “ ‘What is happening to my baby?’ ”

Once called juvenile diabetes because it most often occurs in adolescents, type 1, considered a rare autoimmune condition, is most common among white people. But as diagnoses rise across the board, children of color, some as young as Jace, are falling prey to this life-changing condition, data show:

  • University of Pennsylvania researchers were among the first to identify this trend, finding that diagnosis rates for black children under age 5 in Philadelphia shot up 220% between 1985, when they first started tracking, and 2009, the last year data were published.
  • Nationally, new diagnoses of type 1 diabetes rose at an annual rate of 2.7% among black children between 2002 and 2015, compared with a rate of less than 1% among white children.
  • During that time period, new diagnoses of type 1 increased even faster among Hispanic children — at a rate of 4% a year.

Type 1 is a brutal disease for people of any age or race. Yet research shows that children of color fare far worse than white children, suffering serious complications such as vision loss, kidney failure, severe circulatory problems, and other consequences of blood sugar gone awry.

The disparity cannot be fully explained by poverty or level of education, factors that have been linked to poor health. No matter the family’s wealth or professional and academic achievement, minority children are more likely to have worse blood sugar issues than white children by the time their diabetes is detected. They must endure more hospitalizations and extreme diabetic episodes. And research shows they’re less likely to get the latest monitoring technology that makes managing diabetes far more successful.

Still, there are gains being made — by researchers, clinicians, and the families of children with type 1 — against what not too long ago was a uniformly fatal diagnosis. Progress in efforts to discover exactly what triggers type 1 diabetes, and in making care more equitable, show that these challenges are not insurmountable.

Health workers, increasingly aware of how racial bias has shaped patient care, are more focused on connecting with families and together are developing better plans to keep children healthy.

And as interviews with Philadelphia-area families illustrate, parents are fighting hard to make sure their children’s lives accommodate, but are not defined by, type 1 diabetes.

Their struggles are intense and unending, and the stakes could not be higher, said Lorena Garcia, whose 12-year-old son, David, came close to death when he was diagnosed last year.

“The reason I have a son,” she said quietly, leaning forward from the edge of her sofa in North Philadelphia, “is because I’m here for him.”

What we do and don’t know about type 1

Type 1 diabetes is an autoimmune condition thought to be triggered through a combination of genetic and environmental factors. The pancreas goes on the attack, destroying the islet cells, which are the clusters of cells that make insulin, the hormone that regulates the amount of sugar in the blood. Early symptoms include severe thirst, frequent urination, hunger, fatigue, and blurred vision.

It is almost entirely different from type 2 diabetes, which occurs when the body produces enough insulin but loses the ability to regulate it properly. Far more common than type 1, type 2 is linked to obesity (though it can occur in slim people) and has been rising astronomically among adults — and even turning up among some children. Type 1 is more typical for kids.

Researchers have identified several genes involved in type 1, but genetics tell only part of the story. Even among identical twins, if one gets type 1 diabetes, there is only a 50% chance the other will. Only a small number of people genetically at risk of diabetes actually develop the disease.

Researchers believe that type 1 diabetes, like many other autoimmune diseases, must be triggered by something in the environment, or more likely a variety of factors. An international research collaboration called The Environmental Determinants of Diabetes in the Young (TEDDY) has spent the last 16 years studying these so-called environmental triggers.

For years, evidence has been building that what once were thought to be purely social issues — neighborhood safety, parental discord, abuse — can create physiological changes due to the extreme stress they produce. Asthma, heart disease, and other chronic conditions all have been strongly linked to these “social determinants of health,” according to the U.S. Centers for Disease Control and Prevention, which reports that about two-thirds of adults have experienced at least one life event that put them at greater risk.

Now TEDDY researchers are considering whether this might be among the ways in which type 1 is triggered.

“If we could figure out what the pathway is for genetically at-risk kids, we could do something about it,” said Suzanne Bennett Johnson, a professor at the Florida State University College of Medicine.

Johnson is part of the TEDDY group, which has studied breastfeeding, vitamins, antibiotics, and dozens of other potential triggers, with mostly inconclusive results.

Further complicating the search are signs that there are multiple pathways to diabetes and that they could be indirect.

Promising research by TEDDY links respiratory infections at a young age with developing type 1. It turns out that children who lose a loved one, witness violence, or experience other traumatic or stressful events are more likely to develop such infections.

“Whatever the link between stress and type 1 diabetes is, it’s very complicated and may be different for different children,” Johnson said. “We just know stress is important.”

Type 1 and lifespan

Before insulin was discovered in the 1920s, type 1 diabetes killed most children within a year or two of diagnosis. Now type 1 diabetes can be managed with blood-sugar monitoring, insulin injections, and a carefully tracked diet. But even a century later, it still shortens lifespans by “thickening” the blood with high glucose levels, damaging the kidneys, eyes, heart and nervous system — even when the disease is carefully managed by vigilant parents, patients and providers.

“When we think about chronic disease, diabetes is one that has potentially very high health-care costs and high cost in terms of quality of life,” said Terri Lipman, a pediatric nurse practitioner and assistant dean at the University of Pennsylvania, who started Philadelphia’s diabetes database.

“When we talk about better diabetes control, it’s not [just] about having a better life today. It’s about improving lifespan,” Lipman said.

Aja Morris has had type 1 diabetes since she was 7, but never wanted to face what that could mean.

Now 32, Morris needs a new kidney. And a new pancreas. She’s legally blind in her right eye, which means she can no longer drive, and has had eight surgeries to correct cataracts and glaucoma to try to save vision in her left eye. She has no feeling in her feet and lower legs, and has hard-to-heal wounds that could mean she loses a foot.

Stuck on the couch or in bed when she’d rather be watching her 12-year-old son dunk on the basketball court, Morris often thinks about her pediatrician when she was growing up in West Philadelphia.

“He would always say, ‘You don’t understand the side effects that can happen. You think you’ve got a rubber bumper,’” she said. “And he was so right.”

Morris’ mother, who worked odd jobs and also has type 1 diabetes, and her father, who recently retired from the Philadelphia Police Department, did their best to look after her needs while also caring for her six siblings. But there was only so much they could do with a child who wanted to be like her friends, who didn’t have to monitor their blood sugar and follow a special diet.

Managing type 1 is so complex — and getting it right so imperative — that in Philadelphia, children are admitted to the hospital with their caregivers for several days, both for a formal diagnosis and for rigorous training.

Yet that’s just the start of a difficult mental and physical journey for families.

“When we were discharged, I just wanted to ask the doctor to come home with us,” said Candida Soto, 34, whose son Sage was diagnosed when he was 18 months old. “Because that’s basically what they’re asking you to do — be someone’s doctor and keep them alive.”

When Sage was diagnosed five years ago, family, friends, and coworkers swarmed in, offering meals, babysitting, sympathy. Soto’s boss at the interior design firm where she works told her to take all the time she needed.

But diabetes lasts a lifetime. As anyone managing a chronic illness knows, the extra attention does not. Aside from herself, there are only two people — her brother, who lives in another part of the city, and her mother, who lives in the apartment downstairs from Candida and her sons in North Philadelphia — who are trained to care for Sage.

“We’re all in this together,” Soto said, sinking into the couch in her mother’s apartment and gazing up at a collage of framed family photos. "But we’re in this alone.”

Families go above and beyond

All families, no matter their circumstances, are forever shaped by the stress of managing an unrelenting disease. Families already coping with serious stressors like racism, marital issues, or the struggle to pay bills only see their challenges intensify.

“Diabetes is a magnifier,” said Elvira Isganaitis, a pediatric endocrinologist at the Joslin Diabetes Center in Boston. “If you have a little bit of stress, type 1 can exacerbate it. If you have so-so insurance, type 1 will explode your budget. If you’ve got splinters in your marriage, type 1 can be the wedge.”

Lorena Garcia, who moved to the United States from Colombia when she was 24, had never believed she had a heavier load than she could carry.

That changed last year, as she watched David — an already skinny 11-year-old who dropped 10 pounds in three days — drift in and out of consciousness in a hospital bed at St. Christopher’s Hospital for Children in North Philadelphia.

“My world was turned upside down,” she said. “I came home. I started cooking, but then I started crying, because I didn’t know what to do.”

Garcia had never been much of a cook, but with her emotions in free fall, this was a solid ledge. She quit her part-time job selling women’s shapewear, bought a stack of cookbooks, and started going to the grocery store every other day for the freshest ingredients. Everything David eats, she makes from scratch — down to the sandwich bread in his school lunchbox.

To provide her son with maximum support, she put the entire family on the low-carb diet that David eats to minimize insulin injections. Doctors don’t necessarily recommend low-carb diets for children with diabetes, but that’s the approach Garcia found most comfortable.

MICHAEL BRYANT / STAFF PHOTOGRAPHER David Garcia, 12, pricks his finger in order to take a reading of his blood sugar levels before he sits down to eat his dinner.

Without even needing an alarm, she started waking up at 2 a.m. to check his blood sugar, and visited school in the middle of the day to test him again.

Her older sons and husband tell her to relax, and David’s doctors assure her he’s doing well, but she says she simply can’t.

“We try to emphasize changes that allow children with diabetes to lead normal lives. We try to stress that it should not prohibit them,” said Elizabeth Suarez, a pediatric endocrinologist at St. Christopher’s.

But, she said, caring for a child with diabetes often requires parents to make incredible sacrifices.

Kim and Julian Jarrett are from Jamaica, and are in the U.S., living in Drexel Hill, on visas. Kim is finishing her Ph.D. at Drexel University and Julian works in computer science research.

When Julian’s visa expired in January, he had to take the first job he could get — a teaching position in Rochester, N.Y. — or risk being deported.

The rest of the family remained here, unsure what Jace’s insurance options would be in New York.

“Our jobs are secondary,” Kim said. “Jace’s health comes first.”

Julian has since found a job in Philadelphia. But his being away won’t be the last sacrifice they will face.

Still, the Jarretts know they’re doing the right thing when they watch 4-year-old Jace learning to read and do arithmetic beyond his age level, and especially when they see him play with his baby brother.

Jace, the boy they nearly lost to a disease they once knew nothing about, is thriving.

This article was supported by the USC Annenberg Center for Health Journalism 2019 National Fellowship.

[This article was originally published by The Philadelphia Inquirer.]