Story

26 Years and Counting with T1D

Daniela around the time of her type 1 diabetes diagnosis. Image courtesy of Daniela Rojas Jimenez. Costa Rica. 

Daniela around the time of her type 1 diabetes diagnosis. Image courtesy of Daniela Rojas Jimenez. Costa Rica. 

Her entire body tingled as butterflies swirled inside her stomach. He pulled her close, their eyes met, she could feel him breathing as their lips touched.

For Daniela Rojas Jimenez of Escazú, Costa Rica, this seemingly “unforgettable” life moment was a complete blur. At the time, she was having a severe low blood glucose episode.

She doesn't remember a thing. Daniela can’t remember her first kiss.

Daniela (far left) and family in San José, Costa Rica, prior to having diabetes. Image courtesy of Daniela Rojas Jimenez.

Daniela (far left) and family in San José, Costa Rica, prior to having diabetes. Image courtesy of Daniela Rojas Jimenez.

Daniela was diagnosed with type 1 diabetes (T1D) 26 years ago at the age of 9 in San José, Costa Rica. Little was known about the disease at that time and still today there are too few medical supplies and insufficient training for health professionals to adequately treat those with T1D.

None of Daniela’s family members had a history of diabetes. Therefore, upon her arrival to the hospital, no one considered testing her for T1D.

“The doctors repeatedly told us that 'I was just growing up' [was] the reason I was losing so much weight. Later, when I returned after becoming even more sick, they said I had a stomach bug and that was the reason I kept throwing up. We went along with this. I mean they were the professionals,” Daniela said.

Daniela's illness worsened over the next weeks—she was deathly skinny and had extreme difficulty walking. Daniela’s mother made the decision to take her to a private lab in the city for further testing. She was finally given a glucose test, but it would take weeks for the results to come back. In the meantime, her condition worsened and she was readmitted to the hospital.

This time, Daniela's vital signs signaled that their daughter was dead.

However, with great effort, Daniela was revived—she was left in a coma for weeks to follow.

“When I woke up I didn’t recognize myself—I was so sickly. I had type 1 diabetes,” Daniela said.

The diagnosis was not only a shock for young Daniela, but for her family as well.

“It was of course hard on my parents. They didn't expect this. They had been told this wouldn't happen because it didn't run in our family,” Daniela said.

Today, Daniela works to educate her country on type 1 diabetes and help youth manage the disease via her company—Diabetica Solutions.  Image courtesy of Daniela Rojas Jimenez. Costa Rica.

Today, Daniela works to educate her country on type 1 diabetes and help youth manage the disease via her company—Diabetica Solutions. Image courtesy of Daniela Rojas Jimenez. Costa Rica. 

Post diagnosis, Daniela’s family found most blood glucose meters hard to obtain—only hospitals could provide them. Monitoring blood sugar and knowing how much insulin to inject was challenging.

“For a while I would have to go to the hospital to get my glucose checked,” she said.

Added stress was the fact the hospital’s glucose meters were not accurate—only displaying a number range where the glucose level might be, not the exact reading as they do today.

Daniela never truly knew her precise glucose readings until her mother was fortunate enough to bring a meter back from the United States. Once those ran out Daniela had to wait for more test strips and supplies to be brought back from the U.S. There was always the worry that she would run out.

Learning to manage and control T1D is hard enough with proper supplies, and without them there can be severe complications.

***

Not even medical professionals knew how to diagnose Daniela. Unfortunately, misdiagnoses are still a reality, especially in rural areas where there are no endocrinologists and diabetes specialists.

Lack of knowledge and education put Daniela into a coma 26 years ago. Now she is making an effort to ensure the same doesn't happen to children diagnosed today in Costa Rica.

Today, Daniela is a psychologist helping young newly diagnosed children as well as informing the community about the disease and how it differs from type 2 diabetes.

“We could use more support in educating the Costa Rican population on T1D. People tend to think diabetes is all the same—they think only fat and lazy people have it and therefore sometimes type 1 diabetics face discrimination,” she said.

As part of Daniela’s job she travels to schools to educate individuals on type 1 diabetes so newly diagnosed children face less bullying in school. She is thankful for her ability to pay for access to sufficient diabetic supplies as she knows what her life would be like without them.