In Memoriam to the Undiagnosed

A profile of the human toll of undiagnosed Type 1 diabetes, and a call for better screening.



A blood sugar test to diagnose Type 1 diabetes only takes a minute, but not doing that initial test can cost a life.

When outward symptoms of Type 1 begin to appear, blood sugar levels spike as insulin sensitivity drops. Initial symptoms of untreated diabetes can include increased thirst, fatigue, weight loss, and frequent urination. These symptoms can sometimes be attributed to other ailments, delaying treatment.

When left untreated, the blood sugar imbalance can lead to life-altering, if not fatal, complications. The body begins to burn fat for energy to get the glucose it needs. Ketones build up in the blood, making it acidic, and diabetic ketoacidosis, or DKA, begins, which can lead to death.

The hardest part to accept about deaths from undiagnosed diabetes is how easily they could have been prevented. Diabetes activists recently have been calling on better screening for Type 1 diabetes. To show the importance of such screening, we’ve collected from blogs and news reports four stories of young people who recently passed away from undiagnosed Type 1:

Tyson Irby
Tyson was always seen as a healthy, athletic kid and teenager growing up in Reno, Nevada. He was rarely ill, other than the typical flu or cold during the winter. When he came down with flu-like symptoms at the age of 17, including nausea and body aches, no one thought anything of it.

What no one knew was that after a week of sickness Tyson’s blood sugar levels were in the 3,000 mg/dL range. When paramedics were called, they almost immediately diagnosed him with diabetes on the scene. Within 12 hours of being admitted to the hospital, Tyson had passed away.

Tyson’s diagnosis was rapid, but he had previous symptoms of frequent urination, thirst, and fatigue which he didn’t share with his parents. Tyson was a week shy of turning 18.

Kycie Jai Terry
Kycie Terry was the only daughter of six children in a large family in Utah. The first symptoms of her diagnosis came on after church one Sunday, when she complained of a headache. The next day, she complained of a stomachache and nausea, and was kept home from preschool. A local doctor then misdiagnosed her with strep throat and her parents soon noticed she was losing weight. The following day she was brought to the ER and diagnosed with diabetes, then taken by helicopter to a hospital in Salt Lake City, Utah.

Kycie suffered several seizures, resulting in extensive brain damage. She began a long road to recovery, but she was unable to speak or move. A few months later, she passed away at home from pneumonia. She was six years old. You can read more about Kycie’s story here.

Peter Baldwin
Peter Baldwin was just beginning teenagehood in Cardiff, Wales. He was a selfless young man, spending his spare time working with an anti-bullying group, the Teenage Cancer Trust, and the student council.

Doctors missed the symptoms of Type 1 because they were masked by a chest infection and a virus. He died shortly thereafter in January 2015. His parents plan on presenting a petition to the Welsh Parliament calling for all children in Wales to be tested.

Nicky Rigby
Not all diagnoses of Type 1 diabetes come at a young age; in Nicky Rigby’s case, it came after the birth of her daughter. Nicky was a young mother from Wirral, England; her symptoms of fatigue and weight loss were written off as exhaustion and stress from giving birth and caring for a newborn. She was prescribed iron tablets.

On the night of the birthday of her fiance, Nicky hadn’t been feeling well and went to sleep early, but she encouraged her fiance to go celebrate with a few friends. Upon his return that night, he found her unconscious in their bed, surrounded by vomit. As a result of undiagnosed Type 1 diabetes, her esophagus had deteriorated, leading to her death. She was 26 years old.

 

There are several organizations trying to raise awareness of the symptoms of Type 1 diabetes and calling on better Type 1 diabetes screening. While there are a handful of state groups, there are two national groups that track many of the efforts:

Test One Drop – A group that focuses on raising awareness of the symptoms of Type 1 diabetes.
Up Rising Against DKA – A Facebook group that shares stories of missed diagnoses and coordinates efforts to call for diabetes screening

We encourage you to work to improve Type 1 screening in your community. Please share with us your efforts; you can email our editor, Craig Idlebrook, at cidlebrook@epscomm.com.

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Justin Surgent served as an assistant editor for Insulin Nation and Type 2 Nation. Previously, he was a photo editor and copy editor for UMass Amherst’s independent newspaper, The Massachusetts Daily Collegian.