First person diabetes: three stories about what it is like to live with the disease

"What do we do with the diabetics?" Lorena Merzec listened to that the doctors who attended her at the clinic she had come after feeling bad.Lorena was 40 years old at that time, and not only did she not know that she had diabetes, she didn't know what it meant to have it.

It is no accident that one of the pending debts indicated by people living with diabetes - which in the country reaches 12.8% of the adult population, according to the latest national survey of risk factors - is the lack of information in theSociety, both to stop using terms that do not correspond, to stop looking at glucose measurement devices as strange objects and ultimately, to stop stigmatizing people with diabetes.

In fact, on this World Diabetes Day, the CUI.D.AR association, which advises, informs and works with patients with the disease, launched a digital campaign called “Do you see me?It is time to look at people beyond diabetes. ”

the diagnosis, a bucket of cold water

In the case of Lorena, today with 49 years, the impact of finding out that way that had type 2 diabetes, was a really huge shock: she carried out a healthy life, did sports, had a healthy diet, did not drink alcoholI didn't smoke.

That impact was also transmitted by her doctor, who didn't understand why her either.Lorena took her job as a teacher (she is a lawyer), because she could not even tell her classmates or students what was happening.In fact, when he returned from the license, he said he had spoiled.

In the case of Liliana Tieri, the news that her daughter of just two years old had type 1 diabetes was devastating.He had been overcome the news for two years and assume that his daughter was going to have to inject insulin for life.However, one day he realized that he should "change the chip."

“Diabetes for me was an adult disease, I had no information on the subject, nor did I know that there were people who need insulin.I was the typical mom who, when I led to vaccinating my daughter and applied an injection she looked the other way.When they told me that I was going to have to inject insulin I asked the doctor for how many days.And he replied: all my life, ”he recalls.

“I needed two years to overcome that answer.It was a very big emotional break.But in the meantime, I saw that my daughter, who was the one who put the body every day, laughed, continued playing, having fun.And I understood that I had to accompany her from another place, I couldn't be sad, ”he recalls.

Today Estefanía is 27 years old, it is about to receive from a doctor and in addition to being part of an International Federation of Diabetes in which mentoring other young people globally, he dreams of being a pediatrician specialized in this condition, “to be able to accompany the boysNot only from the clinical and the medical one but also from her experiences, since she lived all her life with the disease, ”Liliana is excited.

Type 1 diabetes is the least frequent, it is estimated that it affects one in 10 people with the disease.It is an autoimmune condition, in which the organism itself destroys insulin producing cells in the pancreas.

As a result “glucose rises rapidly and the patient must be treated with multiple daily doses of insulin or with infusion pumps,” explains León Litwak, endocrinologist specialized in diabetes of the Italian Hospital University Institute.

And he adds: "This condition cannot be prevented since it is an autoimmune disease that is caused by genetic predisposition."It usually appears at an early age.

In the case of Rodrigo de los Santos, the news that his one -year -old son had type 1 diabetes, also shocked him.However, I knew that something was notGood for the symptoms he presented.

“He started walking less and less, the last week before the diagnosis I was peeing all day, he breathed badly.There was a week interned, ”he says.

At present, your child is 15 years old, and independently controls its treatment, which is constant.That is one of the issues that Rodrigo recounts.

“You have to leave the sanatorium managing the disease, glucose measurements, because it is not that you have the doctor next to you telling you what you should do.It is a disease that requires that it is behind, you cannot be depending on the doctor to handle, so it is very important to the patient's education, ”he emphasizes.

Litwak, who is former president of the Argentine Diabetes Society agrees: “Once the patient is diagnosed with diabetes, he must be trained and educated to know how to feed, how to do physical activity, how to take medications and in those who need itHow to place and use insulin.In addition, they must learn to measure glucose according to how the doctor asks for it, ”he describes.

“Type 2 diabetes occurs because the insulin released by the pancreas cannot act.In other words, the problem is not the lack of insulin here, but that this cannot act by lowering glucose.This is mainly due to the presence of insulin resistance due to obesity, sedentary lifestyle, poor diet, ”explains the doctor.

“At present, type 2 diabetes represents 90% of patients approaching the office, but it is a picture that can be prevented or treated in different ways.Eating healthy, staying active and maintaining a healthy weight can help reduce the risk of developing it, ”he adds.

The ways of treating it can include drugs or interventions: “Medications such as metformin can be indicated to help control blood sugar levels or, the patient can undergo bariatric surgery that helps reduce weight when limitingthe amount of foods you can eat at the same time. ”

“A person with diabetes can feed in a very varied way, avoiding direct sugars, non -dietary drinks, excess flour such as bread and pasta, although they can be consumed in adequate quantities.Above all you have to take care of the weight, do physical activity and use the medications that are prescribed, ”he says.

However, in cases like De Lorena, healthy habits are necessary but not enough.

“I have an insulin of complicated, because I am a labile patient and that means that my parameters, even if it is very methodical and fulfills everything, I do not skip any medication or any injection and do physical activity;There are days that I have very high glucose and others that I have very low, eating the same one day as the other, ”he says.

live pending glycemia values ​​

Lorena recalls that the impact generated by the news, and after assuming that he was not going to be cured but to improve his quality of life, had to add containment to his family.

“I felt that I could not contain my mother, who was desperate because she had already gone through all this with her mother who had also had diabetes, and now her daughter had.In addition, at first they tell you that you cannot sleep alone, because hypoglycemia usually occur sleeping and that is dangerous, ”he recalls.

However, he says that he then learned to understand and control his symptoms.

”Today I travel the world and I present myself at airports with my insulin cartel and with the inputs, I have a credential that says that I have diabetes, and they give you a priority of passage because as you feel you cannot be in a row3 hours, ”he describes.

Rodrigo says he had several rispideces with his son's school, since theTeachers did not know how to act in the face of decompensation, and according to account they were protected in a municipal provision that says that students cannot be touched.All this, he felt, made his son be somehow "marked."

Liliana Tieri's daughter dreams of being a pediatrician and accompanying boys with diabetes.Photo Juano Tesone.

Liliana Tieri's daughter dreams of being a pediatrician and accompanying boys with diabetes.Photo Juano Tesone.
Then he learned to live with the disease, and thanks to technology, they find it easier, since it has a meter with continuous sensors that communicate their glycemia values ​​directly to their cell phone without puncturing.

Account that there are also automatic sensors that connect with an insulin pump in the body, which is providing insulin as needed.

pending accounts and challenges

Liliana not only knows about the disease for her condition as a person with diabetes.Following the case of his daughter, he put aside his career as a runner and public hammer, and dedicated himself to his care.

It was such information that he collected ("at that time there was no internet, and since I spoke several languages ​​I made me bring out books to advise me," he recalls), who felt the need to help other mothers and fathers in his situation.

Thus, CUI.D.AR was born, which today also accompanies patients and relatives with type 2 diabetes. "Today we are the community with people with the largest diabetes in Argentina, and the second in Latin America," he takes pride.

It is from that place that you can also take stock of analyzing pending accounts with respect to diabetes."Argentina is one of the few countries in Latin America that has a diabetes law, 26,914, and is a law that just indicates that 100% of medicines and supplies must be covered," he rescues.

However, that is not always fulfilled. ”This law has a regulation that regulates it, which should be updated every two years, but regulates every four.Four years in the world of research and development is a lot, and in people's lives too, then if the regulations are not updated, people have huge conditions to cover what the doctor prescribes, ”he analyzes.

In this sense, it highlights the advances in technology for both “such as medicines and equipment”.But he points out that people do not access even if they have been approved by the ANMAT.

"Not updating implies that many health coverage, whether social works, prepaid or the public system does not cover what corresponds. And that is somehow attempting against the lives of people living with diabetes," he closes.