Roughly 1.6 million Americans live with the frequently misunderstood and, at times, largely invisible autoimmune disease Type 1 diabetes (T1D), which can affect all ages. A T1D diagnosis is a critical point because warning signs are easy to overlook or mistaken for the flu, and too many diagnoses go unrecognized until it’s far too late.
When I was 7 years old, I lived in and out of doctors’ offices with typical childhood viruses that never seemed to get better. I had my tonsils removed in the fall of third grade, and although it was a routine surgery, I — once again — never fully recovered. A few months later, I developed a tooth abscess and ended up in the ER with severe dehydration; the nurses couldn’t even find a vein to insert an IV. (I remember the nurses scolding my parents for not keeping me hydrated as if they had caused this.)
After that, in early spring, symptoms of Type 1 diabetes started presenting themselves. I would go to the bathroom dozens of times a day, yet my thirst was unrelenting. I remember feeling carsick while sitting still in class, and the school nurse brushed it off despite my daily visits. I had lost so much weight I was borrowing my younger brother’s pants.
Luckily, a family friend recognized my symptoms as signs of T1D and suggested I get tested. Those instincts became a reality, and I was rushed to the hospital for a long-awaited diagnosis that would change my life forever.
Though my blood sugar at this point was 672, six times the normal range, I was fortunate not to be in diabetic ketoacidosis or DKA. At that point, I was grateful to be alive, and Type 1 diabetes became a big part of my family’s life. A year after my diagnosis, the emotional toll that comes with the diagnosis/disease was never addressed, so my mom and I started a program called the Bag of Hope, which is a program that delivers bags to newly diagnosed kids that are filled with content, education and support to make the diagnosis process feel less overwhelming.
Now, it’s a program run by JDRF that gives newly diagnosed children all over the U.S. a gift bag to help them transition to this completely new lifestyle.
Unfortunately, my late diagnosis was relatively typical. All the warning signs were there for an earlier diagnosis, but no one caught them. The common symptoms of T1D are surprisingly simple to understand: excessive thirst, frequent urination, fatigue and unexplained weight loss. Upon recognition of these symptoms, a simple blood glucose or urine test allows a health care provider to determine a diagnosis and begin treatment safely and quickly.
But when these warning signs are overlooked, patients will often go into DKA. This life-threatening condition can happen to patients who are yet to be diagnosed and individuals who have lived with diabetes for years as a result of insufficient insulin in the body.
Symptoms of DKA include fruity-smelling breath, stomach pain, nausea, vomiting, extreme lethargy, drowsiness, rapid or heavy breathing, confusion and unconsciousness.
Type 1 diabetes symptoms are relatively easy to spot, and a blood glucose or urine test takes hardly any time at all. However, diagnoses are still commonly missed. A general lack of knowledge of Type 1 diabetes and mistaking its symptoms for common illnesses results in late-stage and potentially dangerous diagnoses, especially once patients enter DKA.
Approximately 46% of patients under 18 in the U.S. are in DKA when diagnosed with T1D. The severity of DKA can lead to further complications and will result in death if not treated in time, and it is avoidable if warning signs of Type 1 diabetes are recognized.
Take the heartbreaking case of Utah resident Kycie Terry. She was a beautiful and healthy 5-year-old girl who began experiencing the telltale signs of T1D over a few months. When her parents took her to the ER, she was diagnosed with Type 1 diabetes and life-flighted to Primary Children’s Hospital in Salt Lake City.
On that flight, she went into DKA. Unfortunately, as the doctors tried to get her skyrocketing blood sugars under control, she was simultaneously experiencing brain damage known as cerebral edema. She slipped into a diabetic coma for eight days, with an MRI revealing the edema over 24 hours later.
Kycie woke up from her coma with over 100 days of difficult recovery from diabetes complications and a brain injury. Sadly, Kycie caught pneumonia, and her weak immune system could not fight it off. As a result, she passed away only weeks before her sixth birthday.
What’s most heartbreaking about Kycie’s story (and so many others like it) is how easily it could have been prevented. The warning signs are easy to spot, yet few people know about them. Even healthcare professionals often fail to consider Type 1 diabetes, and patients go undiagnosed or are misdiagnosed as a result.
Early recognition of symptoms is important for kids and adults alike. The previous notion that T1D can only present itself at a young age is false, and T1D can actually be diagnosed at any age. Understanding symptoms and getting an early diagnosis is the only way to save lives, but this can happen only when Type 1 diabetes symptoms are common knowledge within a community.
T1D diagnoses are happening more often, and 5 million T1D cases in the United States are projected by 2050. The time to create significant awareness is now. That’s why I’m helping with Beyond Type 1’s Warning Signs Awareness and Diabetes Education Campaign. Here in Utah, we know there’s a tremendous opportunity to educate people on the symptoms, and I’m excited the same progress is happening around the nation. Join me in educating yourself and others about the common symptoms of Type 1 diabetes and DKA, because anyone can make a difference.
Early recognition has the power to save lives. To learn more about Beyond Type 1’s Warning Signs Awareness and Diabetes Education Campaign in Utah, visit beyondtype1.org/utah-dka-campaign.
Liddy Huntsman, a Utah native, is a self-proclaimed comedian, type 1 diabetes advocate, and mother of two boys who currently resides in the Dominican Republic.