Dina Ifrah, a stylish, chatty mother of two, slips the cosmetics bag from her purse and with a couple of snaps, places it flat on the table in front of her. The collection of tube-shaped containers, pill bottles and other gleaming accoutrements that hold her world together shine in the dimming evening light as she settles back in her chair.
“Mom has a scare pack now,” she says, referring to herself, her hands never entirely losing touch of the butterflied bag, fingers gently fretting the edges.
“Smarties candies, glucagon pen, extra insulin, spare glucometer,” Dina ticks them off the way a sniper inventories ordnance. “Never had to use it, knock on wood.”
There are two rules for the scare pack: One, it’s never out of Dina’s reach, and two, its twin always resides with Dina and Patrick Ifrah’s 14-year-old daughter, Isabella, who five years ago was diagnosed with Type 1 diabetes.
As those rules came in, most of the rules that govern typical family life went out the window.
“The disease has changed our lives in that we’re always, consciously aware of it,” says Dina. “It’s always on my mind, all the time, every day. Every minute of every day. Always. What are her numbers? What’s her blood sugar?”
“She’s only a few hours from something really bad happening, and it’s scary,” says Patrick. “We’re constantly worrying about a teenager who may or may not think about checking her blood sugar as frequently as she needs to and things getting out of hand.”
Type 1 diabetes, also known as juvenile diabetes, is an autoimmune disease where the body cannot produce insulin. Insulin is a hormone required to get blood sugar, or glucose, out of the bloodstream and into cells where it serves as an energy source. Type 1 most commonly strikes children and young adults and, unlike Type 2 diabetes, its onset has nothing to do with diet or lifestyle choices.
According to the American Diabetes Association, 29.1 million Americans, or 9.3 percent of the population, had diabetes in 2012. Only 1.25 million of those with diabetes, a little over 3 percent, were Type 1 cases. Since then, the number of Type 1 diabetics has grown every year with no firm consensus on why, and proper diagnosis is often tricky.
“Diabetes sometimes shows up as other things,” explains Dr. Yu-Chi Annie Wang, assistant professor of pediatrics at the endocrine and diabetes department of Arkansas Children’s Hospital in Little Rock. “If someone is quite ill with it, they can have some stomach pain and vomiting; sometimes the pain is so severe that they think they have appendicitis. So if you’re not looking out for it, you can misdiagnose it.”
Wang said the most consistent warning signs for the onset of Type 1 diabetes include extreme fatigue, weight loss without a restricting diet, extreme thirst and frequent urination. There’s no cure, and without proper management, Type 1 diabetes can have devastating complications including heart attack, stroke, blindness, amputation and death.
“I think every parent of a diabetic finds the word ‘adolescence’ very scary because they’ve heard of kids who, at the time of puberty, start to rebel against their disease,” Wang says. “They decide they don’t want to take care of themselves as well as they used to. It’s a time when kids naturally progress to independence, an age when they spend more time with their friends and less time with their parents.
“But a child with diabetes who needs to check their blood sugars and count their carbs and take their insulin and who does not have parents or guardians making sure they do those things on time is a recipe for disaster.”
About once every other month a unique group of teenagers meets somewhere in Little Rock to go bowling, take in a movie or just hang out and talk. It is a group like countless other groups of teens bound by the same school, faith or activity. They laugh, roll their eyes over common problems like overbearing parents and generally revel in the brief, electric and bewildering middle ground between adolescence and adulthood. Isabella Ifrah is one of them.
“It feels good to know there are other people who actually understand what you’re going through and can help you with all your problems,” she says. “Because it’s hard being a teenager and having to deal with a disease at the same time.”
After her diagnosis at age 9, Isabella found solace in this group, JDRF Ambassadors. A cadre of diabetic teens who support one another, the ambassadors also raise awareness and funds for JDRF and its work to find a cure.
Today, Isabella also uses the group as a platform to help others coping with the disease.
“We do a lot of fundraisers and stuff to raise money to try and help,” she says. “But we also try to meet at least once every couple of months and do something fun and just be around other diabetics. It’s kind of a safe place because it’s hard for people without (diabetes) to understand. It’s nice to get together to talk about what your life is like.”
Like all teens, the ambassadors have their own language of sorts, coined from day-to-day existence with the condition. When they discuss the latest pumps, they’re talking about insulin devices, not Keds; when they talk about being high or low, it’s a reference to blood sugar levels, not drugs or moods.
But when they talk about acceptance, it means the same thing as what every other teenager wants most.
“Most people believe that you can’t do what you want to do with the disease. But I like to show people that I’m still able to do everything that I want to do,” Isabella says. “I perform, I sing; I can still do everything I want to do, even with the disease.”
Beyond diagnosis and support, the stark reality of living with Type 1 diabetes begins and ends with the blood tests and subsequent adjustments that happen throughout the diabetic’s day. While each patient is different, the Mayo Clinic reports that Type 1 patients typically test their blood between four and eight times per day, before meals and snacks, before, during or after exercise, at bedtime and sometimes during the night.
Depending on whether blood sugar tests high or low, the patient makes adjustments to strike the right chemical balance. Low sugar means eating something to metabolize into glucose; high sugar means a dose of insulin.
Tate Whiteside, a 13-year-old with a surfer’s tousled locks and a laid-back attitude to match, was diagnosed at age 6, so sticking his fingers to test blood or administering an insulin shot is no more upsetting that taking an aspirin.
“I’m so used to it, it’s kinda like life now,” he explains. “It’s like waking up.”
Rote though the process may be, Tate doesn’t underestimate the importance of sticking to his regimen and has educated his friends on what to do if he starts acting abnormally or passes out. But even the most dedicated diabetics experience scary episodes, and a typical teen’s hormones and distractions make such scenes largely a matter not of if, but when.
“I work it into my routine, but it’s difficult to remember sometimes,” he continues. “Like, if I’m barely low, I’ll know it immediately, but if I’m outside playing basketball and I go low, I probably won’t know until I stop and calm down.
“Little viruses and things can lead to really big problems. Like a cold; I’ve almost been hospitalized because of a cold before. I’ve had a bunch of things happen, simple things that led to bigger problems.”
Viruses are just one of the many variables that can throw off a routine. Food itself is complicated. Modern science has produced insulins that allow patients to eat pretty much whatever they want, but as each food has its own nutritional profile – some changing as you cook it – the corresponding adjustment must be calibrated accordingly to maintain balance.
Miscalculation results in blood sugar that’s high, along with feelings of tiredness, constant thirst and urination; blood sugar that’s low comes with “loopiness,” nausea and shakes. More seriously, it can result in over- or under-compensating, which can put a patient in the emergency room, or worse.
Thankfully, medicine and testing materials have come a long way in just the past few decades. Apps now exist to help track blood testing, and insulin pumps help regulate dosages. Research has also developed insulins that are more sophisticated, and optimism runs high for finding a cure.
Such research is supported by events like the JDRF Gala in Little Rock, set for 6 p.m. April 9 at the Statehouse Convention Center. The event, co-chaired by the Ifrahs and featuring the JDRF Ambassadors, will include silent and live auctions, dinner, dancing and recognition of special honorees.
In addition to raising money, Tate Whiteside hopes that the gala helps attendees come away with a better awareness of the disease itself.
“I hope people realize how dangerous this can be and how important it is,” he says. “Some people might just brush it off and not really worry about it, like even if their neighbor has it or something. But at the gala we try to show how important it is to us and our families.”
April 9, 6 pm. For tickets and more information visit JDRF.org.