Eric Van Leeuwen’s Journey: From Misdiagnosis to Advocacy

A Diagnosis Without Questions

Eric’s doctor diagnosed him with type 2 diabetes (T2D). 

He also learned that his blood sugar was alarmingly high, with an A1C of 11 percent. He hadn’t noticed the symptoms, because he chalked them up to other habits. 

Symptoms of type 1 diabetes (T1D) include:

• Frequent urination
• Constant thirst
• Changes in your vision
• Unexplained weight loss
• Extreme fatigue
• Sour-fruit smelling breath
• Cravings for sugar

“I just figured I was really thirsty all the time because I smoked and I wasn’t the healthiest person,” he recalled.

His doctor prescribed metformin and sent him on his way. No additional tests. No discussion about other possibilities. No mention of an endocrinologist. The assumption was made based solely on his age.

At first, the treatment seemed to work. With metformin, diet changes, and more exercise, Eric’s blood sugar levels dropped, and within three months, his A1C was in the 6s. He and his wife incorporated more fresh vegetables, lean proteins, and long walks into their routine. 

What they jokingly called his “Oh, shit, I’ve got diabetes” diet was a drastic shift from the processed and canned foods he grew up eating. For a while, everything seemed to be going well.

When Hard Work Isn’t Enough

For years, Eric followed his doctor’s instructions, but gradually, his blood sugar began creeping up again. The same strategies that had worked so well before were no longer enough. His A1C climbed back into the 7s, and despite his best efforts — walking more, eating better, joining a boot camp gym — his body wasn’t responding the way it once had.

Frustrated, he reached out to his primary care doctor. “My blood sugars are running higher,” he told them. The nurse asked, “What does your endocrinologist think?”

“What’s an endocrinologist?” Eric replied.

That moment was a turning point. His doctor referred him to a specialist who immediately ordered autoantibody testing. 

Autoantibodies are produced when your immune system attacks and destroys your own body. In type 1 diabetes, several specific autoantibodies can be identified today in a simple blood test.

What most people don’t know is that the presence of autoantibodies can develop years before blood sugar starts rising and symptoms are noticeable.

There are three stages of T1D based on the presence of autoantibodies:

• Stage 1: Two or more autoantibodies but normal blood sugar.
• Stage 2: Two or more autoantibodies, abnormal blood sugar, but no symptoms yet.
• Stage 3: Symptoms show up, blood sugar is high, and insulin is a must! 

Eric’s autoantibody results were clear: he had T1D. For four years, he had been managing the wrong condition.

LADA: Latent Autoimmune Diabetes in Adults

Eric’s misdiagnosis is not unique. 

Many adults with latent autoimmune diabetes in adults (LADA)—a slow-progressing form of T1D — are mistakenly diagnosed with type 2 because of outdated assumptions about age and diabetes onset. The consequences can be years of incorrect treatment, frustration, and declining health.

More than half of today’s new cases of T1D are in adults, highlighting an urgent need to improve the healthcare system’s education on different types of diabetes.

Clinicians can request two types of tests to carefully identify a person’s type of diabetes.

Here are the additional diabetes tests Eric’s doctor should’ve ordered to get an accurate diabetes diagnosis:

• C-peptide level: C-peptide tells you how much insulin you’re producing. In type 1 diabetes, this number will be very low. In type 2 diabetes, it’s usually very high.
• Autoantibodies: A variety of autoantibodies develop when the immune system starts attacking and destroying the cells in the pancreas that produce insulin. Autoantibodies are a clear sign of type 1 diabetes.

In the near future, Type 1 Strong’s DNA Test Kit will also eliminate this increasing rate of diabetes misdiagnosis! Using DNA to identify which type of diabetes you actually have means you can prevent months or years of struggling to manage type 2 when you actually have type 1.

A New Reality: Type 1 Diabetes

Hearing the correct diagnosis was overwhelming. Eric sat in the endocrinologist’s office and cried. He had spent years believing he could reverse or “fix” his diabetes. But this? There was no cure. No amount of diet and exercise would make it go away. 

“Once I learned it was type 1, I realized there was no getting away from that one,” he said. “There was nothing I could do to get this thing erased from my life.”

Initially, his doctors kept him on metformin, as he was still producing some insulin. But as his A1C shot up from the 6s to the 8s, it became clear that he needed to start insulin therapy. The transition was daunting. Giving himself injections felt foreign, and at first, he would go to the bathroom to do it, afraid of what people might think.

Technology and Community: Finding Support

Today, Eric manages his diabetes with the help of the Omnipod 5 insulin pump and a Dexcom G6 continuous glucose monitor (CGM). With the right technology, he has found a level of stability that was impossible in the early days of his diagnosis. Still, like many others with type 1, he experiences ups and downs. 

“Yeah, diabetes is terrible. It’s the worst,” he admitted. “The moment I wake up, the first thing I do is look at my blood sugar.”

But one of the most transformative aspects of his journey has been finding a sense of community. A chance encounter at a comedy club introduced him to Rob Howe, a well-known advocate in the T1D space. 

That moment sparked connections that led Eric to join the larger diabetes community, where he found encouragement, shared experiences, and a sense of belonging.

Eric also finds support from his Pyrenees mix, Mardi, whose talents include not sitting still, barking at anyone/anything, and stealing Eric's place on the couch.

The Importance of Advocacy

Eric’s story highlights the urgent need for better screening protocols and education within the medical community. “No one even questioned it,” he said of his initial type 2 diagnosis. “They just assumed.”

For those experiencing similar challenges, Eric has one key message: “Advocate for yourself. If something doesn’t feel right, push for answers. Ask about autoantibody testing. Seek out an endocrinologist. Find a community that understands.”

Diabetes is a lifelong journey, but with the correct diagnosis, treatment, and support, people can live full and thriving lives. Eric Van Leeuwen’s story is proof.