The Changing Face of Diabetes
Diabetes is on the rise, and striking otherwise healthy people in the prime of their lives. Meet three Torontonians who are adjusting to life with diabetes — and thriving, thanks to the multidisciplinary team at Sinai Health’s Leadership Sinai Centre for Diabetes.
Nearly 100 years after the discovery of insulin by professors at the University of Toronto, diabetes is a manageable, if chronic, disease. But it is also reaching crisis levels, with nearly half a billion people around the world expected to be living with diabetes by 2025.
No longer a disease of the very young (type 1) or older adults (type 2), diabetes is being diagnosed in people in the prime of their lives with increasing frequency. When not managed successfully, diabetes can lead to serious health complications, including a heightened risk of heart attack, stroke, kidney failure, amputation and blindness. Who and when diabetes hits is changing rapidly: a 20-year-old in Canada now faces 50/50 odds of developing diabetes. For First Nations people, that risk is 80 per cent.
This is the changing face of diabetes.
Diagnosis: Type 1 diabetes
Age at diagnosis: 41
How he felt: Relieved
When a 41-year-old African-Canadian man who worked out, enjoyed long bike rides on his “fixie” and pick-up basketball—and whose go-to snack was broccoli buds—was diagnosed with type 1 diabetes, it obviously came as a surprise.
Oddly, it was a welcome one.
“I really thought I was dying,” says Daaki Meade. “So when they told me it was type 1 diabetes, I was actually relieved.”
Daaki’s symptoms began in 2016 when he was a part-time student at the University of Toronto and working part-time construction. He suddenly found it difficult to lift things, and when he stood up too quickly he got head rushes.
“Walking home with groceries, I was finding it difficult to carry the bag!” he recalls. “I had to stop twice in a two-block radius. I was so tired, and it was so heavy.”
Daaki’s appetite decreased but he was thirsty all the time, urinating frequently. He was anxious, depressed and sleeping a lot. Alarmingly, he lost weight rapidly, dropping from 250 to 200 pounds over only a few weeks.
Soon he was bedridden.
His fiance, Arlee-Anne Goldson, brought him to a walk-in clinic. When she returned home after filling his new prescription at the pharmacy, Daaki was even worse off than when she’d left him.
She dialed 911.
“It really seemed like I could lose him,” recalls Arlee-Anne.
When the ambulance arrived, Daaki was unable to walk. The paramedics brought him to the Schwartz/Reisman Emergency Centre at Mount Sinai Hospital.
“I thought I was dying,” says Daaki
"That was one of the scariest days of my life,” says Arlee-Anne. “You don’t know what’s happening.”
The doctors took blood tests and quickly found that his blood sugar was four times higher than normal—a telltale sign of diabetes.
In fact, it was severe onset type 1 diabetes. While type 1 usually presents under the age of 35, approximately 10 per cent of cases present between the ages of 40 and 75.
“I had relatives that had diabetes,” says Daaki, whose father was also diagnosed with type 1 in his 40s.
“I didn’t realize they were symptoms!” exclaims Daaki. “I didn’t know them at all.”
Daaki was admitted to the Intensive Care Unit for four days while his care team assessed the disease.
“The staff at Mount Sinai was fantastic, phenomenal. It’s making me emotional just coming up with the words,” says Arlee-Anne. “Their support, compassion and care was just superb. I knew that he was in good hands.”
Barbara Cleave, Registered Nurse and Diabetes Educator at Mount Sinai, spoke with Daaki and Arlee-Anne about the disease generally, and taught Daaki what he needed to know before he could leave the hospital, including how to use the monitoring machines, how to administer insulin so as to avoid an overdose and how to cope with feelings of depression about his diagnosis.
“She helped with the confidence that if you follow these things, you’re going to do better and you’re not going to die,” says Daaki.
He also began working with Christie Hamilton, Registered Dietician and Certified Diabetes Educator, learning about nutrition and what to look for: total carbohydrates per meal, how to read nutritional labels on food and ingredients and how to shop better.
Finally, Daaki was referred to Dr. Jacqueline James, an endocrinologist in the Leadership Sinai Centre for Diabetes and VP for Medical Education, who has been part of Daaki’s care team ever since. Every three to four months, he returns to Mount Sinai for a checkup with Dr. James.
“I do a blood test and a urine test and she tells me ‘You’re okay’ or ‘You need to adjust this,’” says Daaki. “She’s noticing I need to work on my cholesterol.” In addition to adjusting his diet and exercise, Daaki now takes insulin with every meal and checks his blood sugar levels.
The bottom line for patients like Daaki is “you need to become your own pancreas”
The bottom line for patients like Daaki is “You need to become your own pancreas,” says Dr. James. You have to think about what food you’re eating, she says, how many carbohydrates it contains, the composition of the food (whether it also has fat or protein), whether you are going to run, walk, sleep or be stressed out that day and how to adjust your insulin accordingly.
“The outlook for staying healthy long term is really good these days,” says Dr. James. “But people living with diabetes have to have excellent self-care efficacy and self-management skills. And they need a phenomenal interprofessional team helping them achieve their goals for glucose control and reduce the risk of complications.”
These days, Daaki is managing well.
“I’m trying to eat less pasta and pizza and rice and those sorts of things that are supposed to be no-nos,” says Daaki. “But these were also staples for me growing up. So that’s the dance.
Diagnosis: Type “1.5” diabetes
Age at diagnosis: 30
How she felt: Sad
Liz Bettencourt, 35, cried a little when she told her husband she had “type 1.5” diabetes, an unofficial clinical term used to describe a form of the disease that combines the traits of types 1 and 2, and which affects approximately 10 per cent of people with diabetes.
“I was a little sad throughout the day,” Liz says. “I didn’t know what it was — I knew it was some kind of diabetes, but I just felt like: ‘Great. On top of everything else, here’s more,’ you know?”
Liz had already had a tough year. In December 2013, Liz’s daughter, Olivia, was delivered by Caesarean section (C-section). The procedure required a three-day hospital stay, and then Liz hemorrhaged a week later. Meanwhile, Olivia was rushed to the hospital for a week as she had developed an acid reflux problem where milk would come back up and cut off her airway. It took nine months for the problem to resolve; at times Liz had to set her alarm to ring every five minutes because Olivia was choking throughout the day and night.
Liz was always sleep deprived, and not eating well, just whatever was around the house.
“My life was stressful,” says Liz. “Because here I am, a new mom with a new baby, and this is happening to her. So I didn’t really take care of myself.”
It took its toll. Just as Liz went back to work, she started to feel ill. She was tired all the time, really thirsty and urinating a lot. She had patches of dry skin, and numbness in her hands and feet. Then she began losing weight — sometimes three to five pounds a night
“I realized: ‘Okay, this is not normal,’” says Liz. “I shouldn’t be losing weight just out of nowhere like that.”
She booked an appointment for a physical, and based on her symptoms, her family doctor said: “I’m 98 per cent sure you have diabetes.” Blood work confirmed it. Her doctor said she’d probably had it for months without knowing.
However, when Liz’s doctor attempted to control the disease with medications, they couldn’t quite get a handle on it. For a year they tried various drugs but the meds made her sick and her blood sugar levels weren’t improving.
“My diabetes was out of control,” says Liz. “It was up and down, up and down. Not stable.”
Liz’s family doctor referred her to Dr. Caroline Kramer, an endocrinologist and clinician-scientist in the Leadership Sinai Centre for Diabetes, where they did another barrage of tests.
“And then she said, ‘Hey, it’s type 1.5 diabetes’,” says Liz. “And I was like: ‘What? I don’t even know what that is.’”
“And then she said, ‘Hey, it’s type 1.5 diabetes,’” says Liz. “And I was like: ‘What? I don’t even know what that is.’”
Dr. Kramer explains that there really is no official “type 1.5 diabetes”—it’s just a term used to describe a person presenting with symptoms from both type 1 and type 2 of the disease.
Basically, type 1 diabetes is an autoimmune disorder whereby the so-called “beta cells” in the pancreas fail to produce or secrete sufficient insulin into the blood. Formerly known as juvenile diabetes, it typically affects children, young adults and teenagers.
Type 2 diabetes, formerly known as adult-onset diabetes (which affects 90 per cent of diabetes patients) is usually diagnosed later in life. It is characterized by high blood sugar, a resistance to insulin and a relative lack thereof. It primarily occurs as a result of obesity and a lack of exercise, although some people are more genetically susceptible than others.
Cases that don’t fit cleanly within either category — like Liz’s — are often sent to Dr. Kramer’s reference centre for diabetes. Dr. Kramer estimates that 20 per cent of her patients fall within this “grey zone” where they exhibit characteristics of both types of the disease
“Some researchers wouldn’t recognize it as a diagnosis, clinically, and some people would say it’s a specific type of type 1 that was slow-onset, and some people would say ‘No, it’s a type of type 2 that happened earlier,’ and so it’s not exactly a clear diagnosis,” says Dr. Kramer
As such, it can be confusing for patients. “Sometimes patients can seem a little uneasy,” says Dr. Kramer. “They keep asking, ‘Do I have type 1, or do I have type 2?’ and sometimes all the confirmation tests don’t really help much. But the bottom line is to make sure that they receive the proper glycemic control to prevent complications and to help them feel better.”
Since her diagnosis five years ago, Liz has been taking a new program of pills and insulin, as her care team tailored her medication to her unique symptoms. Suddenly, Liz didn’t feel as nauseous and sleepy anymore and everything started to get back to normal, although she admits improving her mental state took some time.
“It took me a little while to adjust to it,” she says.
Some of her challenges include changing her diet — Liz admits to having a weakness for both chips and chocolate — and her weight continuing to fluctuate. Plus, “all the foods that are good for you are always a little more expensive.”
Other challenges are lifestyle related. Parties are hard, she says, for the same reason; sometimes she’d rather just not go.
Nor does she enjoy administering the insulin.
“I was not happy with the insulin. The poking hurts, honestly. It burns. But after I started insulin, I did start feeling better. And that’s the important thing.”
As for exercise, these days, Liz goes for a lot of walks, mostly to the park, where she plays with Olivia — who is perfectly healthy.
Liz says she watches what Olivia eats, and doesn’t keep her diabetes a secret from her daughter.
“She’s like: ‘I don’t want what you have, Mommy’. She sees me do the needle. And I’m really open about it; I want her to learn. Hopefully she never has it, but I like that she’s involved in what I do.”
Liz has only positive things to say about the team at Mount Sinai.
“All of them were really good to me. When you feel sick and you don’t know what’s going on, you just want to get to the bottom of the situation, and they did. They made me feel very comfortable and they explained everything. If I had any worries or questions, I could email, I could call, I could go there.
Diagnosis: Gestational diabetes, followed by type 2
Age at diagnosis: 31 (GDM), 34 (type 2)
How she felt: Not surprised
Eugenia Lopes got the surprise of her life when she discovered she was pregnant with her first child — five years prior, at just 25 years old, she had experienced early menopause and was told she could never have children. Finding out she had gestational diabetes was considerably less of a shock.
“To be honest, I wasn’t surprised,” she says. “I was kind of expecting it.”
Both of her sisters had had gestational diabetes when they were pregnant, and her father had been diagnosed with type 2 diabetes in his early 50s. And although she was careful with her diet, it wasn’t enough. “I mean, believe me, I tried. But sometimes it doesn’t matter how much you try, sometimes it doesn’t work,” she says.
At 24 weeks pregnant, Eugenia was screened for diabetes and, although her sugars were a little elevated, she was told it wasn’t anything to be concerned about; however, another test at 31 weeks confirmed it was gestational diabetes.
Gestational diabetes typically appears during the second or third trimester of pregnancy, affecting one in 10 pregnant women over the age of 30. It occurs when a woman’s body can’t produce enough insulin to cope with the effects of a growing baby and changing hormone levels. High blood sugar levels may then result in such complications as preeclampsia, abnormal sugar levels in the baby, a large baby (increasing the likelihood of a C-section or a birth injury) or even serious cardiac, brain or spinal anomalies. The good news is that after giving birth, gestational diabetes usually goes away
“So to me, it is what it is. You get diabetes, you deal with it.”
“I saw my sisters going through their pregnancies and it’s not the end of the world,” says Eugenia. “So to me, it is what it is. You get diabetes, you deal with it.”
Eugenia was referred to Dr. Denice Feig, the Head of the Diabetes in Pregnancy Program at Mount Sinai, and her team monitored Eugenia closely until she was induced at 38 weeks. Luckily, everyone’s efforts were rewarded with a healthy baby — Eugenia’s daughter Eva Sophia was born in August 2012 at eight pounds 13 ounces — and Eugenia’s gestational diabetes subsequently cleared.
Unfortunately, however, three years later Eugenia was diagnosed with type 2 diabetes at age 34.
“I would be shopping with my husband, and then all of a sudden I would tell him, ‘I have to sit because my vision is blurred, I can’t see well.’ And he was thinking that it was stress, and I said, ‘Well, whatever it is, I need to get myself checked out.’”
Neither of Eugenia’s sisters, ages 43 and 42, had gone on to develop type 2, but research by Dr. Feig has shown that 40 per cent of women who develop gestational diabetes will subsequently do so sometime in the next 16 years.
“Pregnancy is like a stress test,” explains Dr. Feig. Women who have a genetic tendency towards diabetes have to secrete more insulin to overcome the insulin resistance caused by the hormones, “and those who can’t do it develop gestational diabetes. Many of them are at risk for and do go on to develop type 2.”
Research by endocrinologist Dr. Ravi Retnakaran, the inaugural Boehringer Ingelheim Chair in Beta-Cell Preservation, Function and Regeneration in the Leadership Sinai Centre for Diabetes, has shown that the risk is slightly higher in women who develop gestational diabetes while carrying a girl, as Eugenia did. His team discovered that women carrying boys had slightly higher glucose levels and this was associated with a higher risk of gestational diabetes — meaning women who developed gestational diabetes while carrying a girl had poorer beta-cell function because they had developed the disease even without the extra sugar hit of carrying a boy.
Importantly, a diagnosis of gestational diabetes is a critical opportunity for early intervention to try and prevent the progression to type 2, says Dr. Feig.
Dr. Retnakaran adds that researchers at Sinai Health have discovered there is a reversible element to beta-cell dysfunction early in the course of diabetes, and they are doing trials with different interventions, trying to “fix” that reversible component.
“Ideally you want to do it even before the person develops diabetes,” he says. “That’s how you would prevent diabetes. So now we’re focusing on interventions to try and stop people from progressing to diabetes after we’ve identified them as being at risk — such as women with gestational diabetes.”
For now, though, pregnant women need to be vigilant, says Dr. Feig. After their babies arrive, they need to get their recommended glucose tolerance test. If they don’t, and develop undiagnosed type 2 and aim for a second pregnancy, the outcomes can be much worse. Type 2 presents with higher rates of stillbirth and an increased risk of serious congenital anomalies.
“Unfortunately, the rates of postpartum mothers completing that test, globally, are disappointing,” says Dr. Retnakaran. “It’s understandable to a degree, because obviously new mothers are busy and it’s hard to take that time for their own care, but it’s really important.”
Meanwhile, Eugenia had the second surprise of her life when she became pregnant again. This time, as she already had type 2 diabetes, she was referred to Dr. Feig earlier, at 16 weeks.
“When I started out, there weren’t any women with type 2 during pregnancy,” says Dr. Feig, “because I was told type 2 was a disease of 50-year-olds. Over the last 20 years, the prevalence has increased so much that the rate of type 2 has overcome the rate of women with type 1 in pregnancy.”
Despite the increased risk, Eugenia’s story had the best possible ending—her son Nathan Daniel was born in September 2019, weighing a healthy eight pounds 12 ounces.
“Mount Sinai has a great team of gynaecologists and specialists that monitored my high blood pressure, my diabetes,” she says. “They were always on top of things and gave me the best care that I could possibly have.”
Story by Derek Hill | Photos by Jacklyn Atlas