Two Sisters with T1D: Still One Misdiagnosed

Justine’s Journey to the Right Diagnosis

What started as feeling under the weather stretched into eight months of relentless symptoms. Justine’s vision blurred, she was throwing up nearly every day, and exhaustion was her constant companion. Her story began in February 2020, just as the COVID-19 pandemic took hold. Justine had taken a trip to Mexico, flying through LAX, where she endured a long wait in customs. Days later, she fell ill. There was no testing protocol at the time, no way to confirm whether it was COVID-19, but she knew something wasn’t right.

But what made this even more baffling was that Justine had been tested for diabetes multiple times throughout her life. Her sister had been diagnosed with type 1 diabetes (T1D) at the age of 10. Because of her family history, the family periodically checked Justine’s blood sugar levels when she was younger and even into adulthood. Each time, the results had been normal.

This long-standing assumption made her symptoms even easier to overlook. The years of normal test results led her to believe she would not develop the disease. When her body started sending warning signs, the idea of diabetes wasn’t even on her radar.

The Assumed Diagnosis

By the time she sought medical help, her symptoms were undeniable. Rapid weight loss, constant thirst, vision changes—hallmarks of diabetes. But instead of looking at the full picture, doctors saw her age (Justine was in her late 30s) and immediately assumed she had type 2 diabetes.

A glucose tolerance test confirmed that her blood sugar was dangerously high. The response? A crash course in carbohydrates—sort of—and a prescription for metformin and glycoside at maximum doses.

"I was so sick. The medication wasn’t helping; my blood sugar was still high, and they just kept increasing the dose. It never occurred to them that it could be something else."

Her body was crying out for insulin, but instead, she was given pills that only made her feel worse. Frustrated and exhausted, she eventually stopped taking them.

A Sister’s Intervention

Her sister, Monique, who had been living with T1D since childhood, knew something wasn’t adding up. She pointed her toward BC Diabetes, a nonprofit virtual clinic in Vancouver. Unlike the dismissive interactions she had experienced in traditional healthcare, BC Diabetes offered structured support. A caseworker walked her through the process, and an endocrinologist finally ordered the test that should have been done from the start—a C-peptide test.

The results were clear: she had latent autoimmune diabetes in adults (LADA), a slow-progressing form of type 1 diabetes.

‍At 39 years old, she had spent three years battling high blood sugar and worsening symptoms, all because her providers had never questioned their first assumption.

The Reality of Fighting for Care

Getting the correct diagnosis was only the beginning of Justine’s battle. Because of the initial misdiagnosis, accessing insulin and continuous glucose monitors (CGMs) was a bureaucratic nightmare. Canada’s healthcare system required additional approval, forcing her to navigate red tape just to get the medication she needed to survive.

"Diabetes isn’t rare! Why is it so hard to get diagnosed and get help?"

She learned everything she could about carb counting and insulin management—not from doctors, but from her sister and the diabetes community online. The system had failed her, but she couldn’t let it continue.

The Unpredictability of Life with T1D

Today, she’s still figuring things out. The hormonal fluctuations of her menstrual cycle affect her blood sugar, sick days throw off her insulin needs, and faulty CGM sensors can turn a routine day into a guessing game. But she’s adapting.

"Yesterday I was with a client, and they were talking and talking… and I was going low. I was sweating, but I didn’t want to interrupt them."

As a real estate agent, her job takes her everywhere—sometimes deep into the woods to explore rural properties. There was a moment when, mid-hike with a client, she realized she had no fast-acting sugar to treat her hypoglycemic episode. 

Panic set in. What if her blood sugar crashed? What if she passed out miles from her car? These are the daily realities of managing type 1 diabetes in a job that doesn’t always allow for breaks.

Bonding Through Diabetes

Not all moments with diabetes are isolating. One day, while showing a family an 80-acre property, she took a break to grab glucose from her car. As they neared the end of the walk, she suddenly heard the unmistakable sound of a CGM alarm.

"I recognized the sound immediately. Their son had just been diagnosed with type 1 diabetes at eight years old. It was such a bonding moment. We ended up talking for an hour about diabetes."

That connection—an unspoken understanding between those navigating the same challenges—reminded her she wasn’t alone. And neither was that little boy.

Advocating for Change

Justine’s story highlights a widespread issue: too many adults are misdiagnosed simply because of outdated assumptions. Her experience underscores the need for greater awareness among both healthcare providers and the general public.

Diagnosing diabetes isn’t just about age—it’s about understanding the full picture of a person’s symptoms, history, and proper testing. A simple C-peptide test could mean the difference between years of struggling with the wrong treatment and getting the proper care immediately.

By sharing her journey, Justine hopes to help others recognize the signs of misdiagnosis and feel empowered to ask for additional testing. No one should have to fight for the correct diagnosis, but if something doesn’t feel right, pushing for answers can make all the difference.