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When James Telfer was asked several years ago by his endocrinologist at St. Joseph’s Hospital for a loan of his creative design talents, he was happy to oblige. The request was for a special medal to be presented each year to patients with insulin-dependent diabetes who reach 50 years since their diagnosis.

As a long-time diabetes patient himself, James, a London design artist, understood how momentous it would be to reach half a century living with the condition, and how meaningful the medal would be to patients reaching the milestone.

James designed the medal, which has since been given out annually at St. Joseph’s Health Care London’s Diabetes Half Century Awards, and which celebrates patients for their contributions to diabetes care and education, for their commitment to their health, and as role models for others. In 2020, James was on the receiving end of the medal he crafted.

James, 62, was 12 when he was diagnosed. Immediately, his mother lay down the law and set the tone for how he would live the rest of his life. He was taught how to look after himself and what it would take to ensure a long, fulfilling future. As a result, he never felt limited in what he could do.

Summers at a camp for children with diabetes, where James would go on to become a counsellor, were also instrumental in shaping his approach to life with diabetes. A “mystical” place that not only immersed him in wilderness adventures, camp was also where “there was no bellyaching” about having diabetes and where he learned that knowledge was power when it came to managing his condition.

James would go on to become a design artist and a fearless traveller to far-flung corners of the globe where he collects works of art for his London home décor store, called Splash. He equates being a successful artist to being successful at managing diabetes.

“To do what I do you have to be awake and aware all the time. It’s the same with diabetes.”

James has participated in several key diabetes trials over the years that have helped to redefine care for people with type 1 diabetes. When asked to design the Diabetes Half Century Award medal, “it was something else I could contribute.”

It was Christmas 1965 when Ann Imrie’s uncle took one look at her and knew she had diabetes. He had diabetes himself and recognized the signs, but he didn’t have the heart to tell Ann’s mother during the holidays.

She was diagnosed a few days later. Ann remembers the date – Jan. 4, 1966. “I was 10. I had dropped 20 pounds in two weeks. I remember being so thirsty I ate an entire box of mandarins all at once, one after another.”

Ann describes an “over protected” childhood being “watched like a hawk” by her worried parents who limited her to more sedentary activities. She was the only student with diabetes in her school, which inspired so much awe and intrigue among her classmates that one boy chose diabetes as the subject of his Grade 6 speech.

Like many others, Ann was told that she would not live a long life. She gave up on her dream of becoming a nurse because the hours, she was warned, would be impossible to manage.

Fifty-six years later, it’s a very different world for those living with Type 1 diabetes, and few are as struck by the stark contrast as Ann, whose daughter was diagnosed 24 years ago, at age 13.

“I was in and out of hospital, staying up to two weeks at a time,” says Ann. “My daughter has never spent any time in the hospital except to have her baby. She was a figure skater. Whatever she wanted to do she could do.”

Ann credits the difference to better diabetes testing, control, research and knowledge. Like her daughter, she uses an insulin pump. And like her daughter, there are now no limitations to what she can accomplish with a little planning.

Fatigue, a lack of appetite, a racing heart, and rapid breathing are confusing symptoms for an 11-month-old infant and her parents. It took a trip to the Children’s Hospital Emergency Department and many tests before Michael Ketelaars and Tonya Gil’s daughter Brienne was diagnosed with Type 1 diabetes.

“We didn’t understand the diagnosis, or how it would change our life. We had never heard of anyone so young getting diabetes and didn’t realize that she would not grow out of it,” says Gil.

Following the midnight Emergency Department diagnosis, Brienne was then admitted to the Paediatric Intensive Care Unit with diabetic ketoacidosis, a serious complication of diabetes that develops when your body can’t produce enough insulin. “The shock during those next 12 hours was incredible. We experienced a large range of emotions and felt helpless. It took some time to realize she will be on insulin for the rest of her life,” adds Ketelaars.

Over the course of the next week, the health care team’s priority was stabilizing Brienne and teaching her parents how to care for an infant with diabetes. “The team wrapped their arms around us. Right away we entered two days of training as part of the Children’s Diabetes Clinic within the Paediatric Medical Day Unit. We started with the basics about diabetes, what to feed her, and when and how to dilute and administer insulin,” explains Gil.

As part of their training they received a backpack with educational materials. Included was a monkey named Coco. The parents used Coco as an education tool to explain to Claire, Brienne’s four-year-old sister, what was happening to Brienne. “Claire would come and give the monkey insulin. It provided a little bit of joy and reduced our stress,” says Gil, while laughing. “When we had to inject Brienne with insulin we would clap and say ‘yay,’ and she would also clap and say ‘yay’.”

After a month of treatment, Brienne’s weight gain was incredible. “We didn’t notice how small she was, even with regular measurement and family doctor appointments,” says Ketelaars. After three months, Brienne moved from pokes and needles to a continuous glucose monitor and insulin pump. Her parents can monitor her blood sugar levels instantly, even when she is sleeping.

“Brienne lacks the ability to communicate when she is feeling low. Technology allows her parents to see her blood sugar level every five minutes and always keep one step ahead of her body,” explained Shannon Hogeterp, registered nurse and diabetes educator at Children’s Hospital. “It is lifesaving.”

Now two years old, her parents describe her as a joyful child who is starting to find her language and discovering her personality. She celebrated her second birthday with a family barbeque and ice cream cake; her parents now knowledgeable enough to adjust her insulin to plan for the treats other children may take for granted.

Brienne returns to Children’s Hospital for a Diabetes Clinic check-in every three months. With their care team they discuss her progress and make little tweaks.

“In between our check-ins, we can upload information any time. Our care team will also ask for the information and we rely on their knowledge,” says Gil. Brienne will continue receiving care at Children’s Hospital until she is 18 when she will transition as an adult patient.

“Paediatric diabetes care is very different from adult care. Families consistently upload their children’s information and we are in touch often. We can quickly respond to highs, lows, and changes that happen as part of their life, like going to school,” explains Hogeterp.

As for the future, Ketelaars, who works with digital technology in mobile banking, says he has complete confidence that insulin administration technology will continue to evolve, maybe into a fake pancreas, or perhaps there will eventually be a cure for diabetes.

Until then, Ketelaars and Gil remain proud of their tough and resilient daughter.

Growing up with Type 1 diabetes 51 years ago in St. John’s, Newfoundland, Bernice Jardine was unaware of the sacrifices her family must have made for her. The second youngest of six children, and her father stationed at an airforce base away from home, Bernice’s diabetes would have added significant work and worry for her mom.

The only fruit Bernice saw came in cans – and the sugar-free options would have cost a small fortune at a time when money was tight. “In retrospect, I think of the hardship it must have been.”

Just before her 12th birthday, Bernice’s weight plummeted and she recalls insatiable hunger and thirst. When her mother found Bernice up at night eating and drinking, she was taken to the doctor and immediately hospitalized. They were told she live until late teens or early twenties – if she was lucky.

At Janeway Children’s Hospital in St. John’s, a diabetes education program for inpatients had just begun. Bernice was the program’s first patient.

“I was scared. They taught me how to give myself injections using an orange and how to test my urine with urine strips. I remember returning home and celebrating my 13th birthday. Instead of my mom’s usual chocolate cake, she made me an angel food cake with whipped cream. I cried and cried.”

To her credit, Bernice’s mom never limited her activities, and neither did she. For the most part, it worked out well, except for that one silly experiment with beer in her early twenties that landed her in a coma and being given last rites in hospital. She hasn’t drunk beer since.

Bernice became a nurse – a profession that, on sheer whim, would bring her to London. For the next 37 years, she worked at St. Joseph’s and University hospitals. If there is anything others can take from her 52-year journey, it’s reassurance that diabetes need not derail hopes, dreams and adventures, says the 65-year-old.

“When you’re diagnosed with diabetes, you think ‘this is it, this is the end. I can’t live a normal life.’ It’s not true. Not only can you live a normal life, you can live a wonderful life.”

Thirty-two years ago, the Flame of Hope at London’s Banting House was lit for the first time as a beacon to those living with diabetes that a cure is only a matter of time. It was kindled by The Honourable Judge John M. Seneshen, the driving force behind the flame’s creation.

Among those who find comfort in that eternal flame is Bob Seneshen – the late judge’s son and motivation. In 2015, Bob was among those receiving the St. Joseph’s Health Care London’s Diabetes Half Century Award having lived well with diabetes for 50 years. Each receives a print of London’s Banting House and a special medal to commemorate their achievement. The features the Banting House Flame of Hope. It’s most fitting that Bob would become a recipient.

“My dad would be absolutely pleased, but then he would say we still need to work toward a cure,” says Bob.

Diagnosed at age 13, Bob never thought he would live past 30. No one actually told him that but as a voracious reader he did his own research and assumed he would not live a long life. When a friend with diabetes died at age 19, it added credence to Bob’s ominous theory. But it didn’t stop him. He was a downhill skier, a scout, lifeguard, took up martial arts in adulthood and has his black belt.

“My parents were very supportive. I never heard ‘you can’t do that’. They were concerned and caring but made a conscious decision to let me live a normal life.”

The only barrier Bob experienced was the police service, which, at the time, didn’t allow people with diabetes to enter the force. Bob’s eyesight also met a failing grade.

“I wanted to become a police officer. My father and grandfather were police officers. It was a disappointment but not a huge thing. That’s the way it was.”

He became a businessman and later a Justice of the Peace, following, after all, in the footsteps of Judge Seneshen, who was passionate about developing Banting House as a museum. Bob jokes that Banting House and the flame “was all about me.”

While he wishes a cure was closer for the next generation of those with diabetes, Bob is pleased with his success at living with the condition. He thanks his parents, physicians and wife Linda – “you have to be patient to be the wife of a diabetic” – for helping him do so.

In 1978, Carol Guest became one of the first patients in the world outside the United Kingdom to use an insulin pump. Under the guidance of pioneer Dr. Wilson Rodger at St. Joseph’s Hospital in London, she was part of the earliest pump trials. “The pump then was about the size of a brick. I remember trying to get into the bathtub and balancing this big thing on the edge. Now it’s the size of a pager and can be unhooked.”

Diagnosed at age five, Cheryle Nother remembers missing out on sleepovers and “breaking a lot of rules” as she got older. “I ate a chocolate bar at age 13 and then sat under a tree prepared to die. That’s what I thought would happen. It was Jersey Treasure Milk. I’ll never forget it.”

When Susan Huson was diagnosed with diabetes in 1967, the “good news”, she remembers being told, was that people with the condition could now live up to 50 years. She was 11 years old at the time.

“I did the math and thought, ‘well, I wouldn’t want to live to 61 anyway.’ It sounded so old. But here I am – age 65. It makes me happy to have reached 54 years living with diabetes.”

Susan was near death when diagnosed as a young girl, her signs and symptoms missed for weeks. Her father, a Baptist minister, ran a camp during the summer and her mom was the camp nurse.

“I remember the thirst – I was so thirsty – and constantly trying to find cold water to drink,” recalls Susan. “The camp pumped drinking water up a hill to the dining hall where it sat in a reservoir, so it was never cold – not nearly cold enough to quench the thirst of undiagnosed diabetes. I would therefore go down the hill to the well, where there was a hand pump, and pump my little heart out, desperate for the ice cold spring water that flowed out.”

When the family headed to a Baptist conference in Muskoka where her father was speaking, a relative noticed how thin Susan had become. She had shed 20 pounds from her already-small frame. Susan was taken to a hospital in Huntsville, where her mother was told she had diabetes and to come back the next day. Her mother refused to take Susan out of the hospital. That night, her condition took a turn.

“They didn’t know if I would live or not. My father missed his talk and the conference turned into a prayer meeting for me.”

Susan rebounded but growing up in Rouyn Noranda, Quebec, there was no specialized diabetes care. Like all those with diabetes at the time, she relied on urine testing to monitor her blood sugar levels, not the most reliable method. Blood tests would be sent off but results would take a week, which did little to ensure good management of her condition. Once a year Susan would travel to Toronto, more than 600 kilometres away, for a week-long battery of tests to see how she was doing and have her treatment adjusted.

“Today, I can’t imagine not being able to properly measure my blood sugar levels,” says Susan. “I’m a fanatic about it. When I think back, I’m sure my blood sugars were high throughout my teenage years. I can remember not feeling well. And to think I went through three pregnancies without a blood glucose meter. It’s amazing how much easier it is today to look after myself, feel good and still enjoy life.”

Diagnosed as a young teen in 1958, Mary Ann refers to diabetes as an “uninvited, unwelcome, very demanding, 24/7 visitor that wants its own way at any cost.” She could have become a victim, she says, “or I could learn to live with it and become a master negotiator to keep it in check. So that’s what I did.”

Graduating high school as a top student, Mary Ann applied to every school of nursing in Montreal. None accepted her. Her endocrinologist couldn’t figure out why. He visited the director of nursing education at St. Mary’s Hospital in Montreal who confirmed that diabetes was the barrier to Mary Ann’s quest to become a nurse. The endocrinologist gently reminded the nursing director that he educates student nurses about diabetes, teaching them that those with the disease can live normal lives. He asked the director if he should stop doing so. Shortly thereafter, Mary Ann received a letter of acceptance and began her studies. She would complete her education at McGill University and become a registered nurse and health educator.

“Throughout my life I have been blessed with people who have supported me and advocated on my behalf.”