How It All Began: Beyond Type 1 Staff Diagnosis Stories

Beyond Type 1 created its #SeeTheSigns of Diabetes Awareness Campaign with a goal to advocate for safe and early diagnoses of diabetes. Far too often, a type 1 diagnosis is accompanied by severe complications such as diabetic ketoacidosis (DKA) or worse, making our work to share the signs and symptoms far and wide that much more apparent.

The Beyond Type 1 team is made up of a number of people living with diabetes, caring for someone with diabetes, or both. Here, some of us are sharing our diagnosis stories, warning signs we exhibited, and we want to challenge our community members to do the same. Recognizing the signs and symptoms of diabetes matters, and sharing how we encountered these signs can be the difference between life and death for someone else. Learn more about ways you can make a difference and explore our #SeeTheSigns of Diabetes Awareness Campaign here.

Mila Ferrer, Programs Manager + Mom to T1D Jaime

Diagnosis Date: May 2006

My husband and I started noticing that our youngest son Jaime (pictured here) was displaying type 1 diabetes symptoms, but we had no idea what those signs were. Our son was thirsty, he was frequently peeing, his appetite had changed, and his mood was off. We thought he was going through the terrible threes, or he had a urinary tract infection. When you live with your child and see him every day, you sometimes do not notice the weight loss that accompanies a type 1 diabetes diagnosis. It was my mother-in-law who came to visit and immediately pointed out that Jaime looked skinny and sick. For me, that was the last red flag I needed to reach out to his pediatrician; I called her and told her his symptoms, and she did not hesitate to say to me she suspected it was type 1 diabetes. One hour later, we were at an urgent care clinic with a type 1 diagnosis. My son was not in diabetic ketoacidosis (DKA) during his diagnosis, and I will never get tired of thanking our pediatrician and her fast diagnosis. Together we can prevent DKA, but the general population needs to be aware of the early signs.

Lala Jackson, Director of Content

Diagnosis Date: Thanksgiving Day, 1997

In the fall of 1997, I had just started at a new school for sixth grade. Very quickly, teachers started telling my mom that maybe the school wasn’t right for me—I was constantly lethargic, always leaving class to go to the bathroom and seemed generally disinterested in being there. This surprised my mom since every year before, I was a voracious learner and loved going to school. Over the next month, I lost nearly thirty pounds on a 5’4” frame that didn’t have the weight to lose; multiple doctors told my mom I was doing it on purpose to somehow better fit in with my new peers. They told her I had an eating disorder—a common type 1 diabetes (T1D) misdiagnosis for preteen and teen girls. I have flashes of memories from that time—trying and failing to eat a single scrambled egg but downing 2-liters of Sprite daily. Barely being able to walk up the hill to my school’s gym. Lots of lying around in bed. At about 4 o’clock in the morning on Thanksgiving day, my older brother—who had been sensing something was seriously wrong with me for a while but didn’t know how to get through to the adults—tried, unsuccessfully, to wake me up. My family rushed me to the hospital. Moments after I was carried into the ER, a nurse came over to check on me. She smelled my sweet breath, which should have been a dead giveaway to all the doctors who said these health issues were my own doing, and did a blood sugar check. The meter just read “HI,” so she instantly diagnosed me with T1D. I spent the next day in the ICU of the local Children’s Hospital, then another three days stabilizing as I recovered from DKA. Had my brother not known something was seriously wrong that morning, I probably would have slipped into a coma or worse.

Sara Jensen, Chief Creative Officer + Mom to T1D Henry

Diagnosis Date: February 7, 2013

In 2012, I knew something was going on with our son Henry (pictured here). I could not quite explain it, but he seemed to get more agitated after eating. When he began to lose weight, it was slow at first but I knew in my heart that something wasn’t right. I took him to our pediatrician who brushed me off and said that our son was fine and that I just needed to calm down. He continued to lose weight and I brought him back to the same pediatrician, who again, looked at me like I was nuts and told me I was overreacting. A few weeks later after eating pizza for dinner, he was guzzling water and getting up every 30 minutes to go to the bathroom. He had dark circles under his eyes and his arms were stick thin. In the morning I called my friend who was also an NP and was local and told her what was going on. She told me to bring him in on her lunch break. She took a urine sample and pricked his finger to check his blood glucose. Within an hour we were on our way to the emergency room at the local Children’s Hospital which was five hours away by ferry and car. If we had waited just a few more days, I don’t know that Henry would still be alive. I can’t stress this enough, if you really believe something is making your child sick, listen to yourself and seek out other providers. Your instincts are typically spot on with your children and you need to believe in yourself.

Mariana Gomez, VP of International Markets

Diagnosis Date: July 1984

I was 6 years old. I had been feeling very unwell for probably more than month. I was losing weight, drinking a lot of water, my vision was blurry, I lacked energy and didn’t want to play. As I had always been extremely active and alert, my parents knew immediately that something was wrong. They took me to my pediatrician not once but probably dozens of times and then to different hospitals, where I was prescribed treatments for a variety of things. But I did not get better. My health deteriorated until, one morning, I felt strong stomach pain and could not raise my head or open my eyes. I was just too tired to think. My dad did everything he could to make me feel better including giving me lots of apple juice and playing my favorite record, “The Jungle Book,” thinking that would make me feel better. Things only got worse. My parents took me to the emergency room. I remember being out on an IV drip. I felt tired and confused. I fell asleep. Profoundly asleep. My parents say one of the doctors noticed a fruity odor in my breath and requested their authorization to run a blood glucose test. The result was clear: it was type 1 diabetes. Five days later, I woke up. I now know I was in a coma for those five days. A few weeks later, I was able to go back home, but my life had changed. If we had only known the signs and symptoms it could’ve been a lot easier for all of us.

Eugenia Araiza, former Project Manager: Spanish Properties

Diagnosis Date: November 1996

I was 16 years old and I was an exchange student in the USA. For some time, I didn’t feel well and since at that time, communication and technology were not as good as they are now, my parents didn’t notice my weight loss or the decline in my wellbeing. So when I called my parents, I told them that I was drinking more water than usual. I hardly drank water, so that made them happy. I also told them that I was going to the bathroom more often than usual, but for them it was natural, since I was drinking more water, then I went to the bathroom more—it was logical. My vision was starting to feel blurry so I went to the doctor, who prescribed me glasses to see better and yes, he asked if I had diabetes and my answer was: of course not! No one in my family had diabetes and I hardly knew anything about the disease. I remember it was Thanksgiving when suddenly, the voracious appetite that I had days before disappeared. I wasn’t hungry anymore, and a day later my throat began to burn a lot and I began to have tremors. My host family immediately took me to the doctor’s office, which was closed for the holidays, so instead they took me to the emergency room. I only remember lying down on the stretcher and nothing else. Two days after, I woke up from a diabetic coma, just moments after my mother had arrived from Mexico. My diagnosis: type 1 diabetes, with a blood glucose level of 64.7 mmol/L1165 mg/dL at the time of admission to the hospital. Two weeks later, I returned to Mexico for a few months but my family and I decided that diabetes was not a good reason to stop my dreams so I returned to finish my school year as an exchange student in the USA.