March 31, 2021, 6:08 pm | Read time: 6 minutes
Around 3,000 children in Germany are diagnosed with Type 1 diabetes each year and must learn to live with this diagnosis. How well they manage depends also on parents, caregivers, and teachers.
“Your child has diabetes.” This is a shocking message for parents. “Many see their future plans collapse, a lifelong illness, massive daily restrictions, a chronically ill child,” says Tübingen pediatric diabetologist Prof. Andreas Neu. But after the initial shock, the focus eventually shifts forward: “Most families learn to cope after about six months, not just technically: measuring blood sugar, administering insulin, being prepared for emergencies,” Neu explains. “They also learn: Life doesn’t end with the diagnosis.”
Prevention is not possible
Estimates suggest that around 3,000 children in Germany are diagnosed with Type 1 diabetes annually, and more than 30,000 children and adolescents under 18 have the metabolic disease in this country.
Unlike Type 2 diabetes, where lack of exercise, poor diet, and obesity are risk factors, lifestyle plays no role here. An autoimmune reaction triggers Type 1 diabetes. Prevention is not possible. What exactly causes the onset is the subject of research. There are no clear answers. Genetic predispositions contribute a small part, says Andreas Neu. “There are also trigger factors that we don’t know in detail, which can initiate the autoimmune process.”
The fact is: No one can change the onset. “At first, parents often grapple with the question of guilt: What did we do wrong, what could we have done?” says the vice president of the German Diabetes Society. But they did nothing wrong. However, it is important to know the possible symptoms of Type 1 diabetes: constant thirst, frequent urination, weight loss, and constant fatigue. If diabetes goes undetected for too long, it can lead to a potentially life-threatening metabolic imbalance.
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Outdated views lead to problems
Marlies Neese has been advocating for children with diabetes and their parents for decades. She also provides education in schools and daycare centers. “There is still a huge need,” says Neese. In her experience, there are always outdated views about insulin-dependent diabetes among teachers and caregivers, making it difficult for the child to experience a normal and as carefree as possible school or daycare life.
Two things are important from Neese’s perspective: The child’s teachers and caregivers must have a basic understanding of insulin-dependent diabetes. This includes recognizing dangerous hypoglycemia and knowing what to do before and during sports, on class trips, and during other special activities.
They must also understand, Neese says, that the child sometimes needs to eat, administer insulin, and measure blood sugar during class. Generally, the child should be seen as “normal” and given assistance where necessary–that would be the ideal for successful integration, says Neese.
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Deficits in training the environment
Andreas Neu sees significant deficits in training the environment: “It doesn’t help if I train the parents, but the child is in daycare or school all day or at practice. These second-line caregivers also need to be trained, and that’s not included in any budget.”
The long-term care of families by medical professionals includes regular training. These are not limited to handling insulin but are diverse, says Neu. “The topics change depending on age.” For example, when school trips are added, when adolescents have their first experiences with alcohol and sexuality, or when the question of a driver’s license arises at the end of school.
Marlies Neese tirelessly advocates for more acceptance and education. She is the chairwoman of the association for children and adolescents with diabetes mellitus, advising children, parents, daycare centers, schools, health insurance companies, and other institutions. Her drive comes from her own experience. When her daughter was nine years old, she was diagnosed with Type 1 diabetes. “I was stunned, I didn’t take anything in at first,” says Neese, recounting: “Then as now, it’s often said in school: ‘The affected child must go to a special school.’ Or that admission is only possible with an integration aide.” Integration looks different.
The important role of parents
According to the expert, it repeatedly shows that parents play a central role. The better they are trained and thus able to deal with and understand diabetes, the better they can advocate for their child in daycare or school.
The influence of parents also depends on the child’s age, as diabetologist Neu says. Especially older children may fall into a slump due to the diagnosis, while affected children in daycare and elementary school often quickly and seamlessly integrate the disease into their routine, the expert notes.
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Number of new cases doubled in 25 years
Type 1 diabetes can occur in children of any age. And there is a shift, says Neu: “In the past ten years, we have seen that the age of onset is increasingly shifting to younger ages.”
The trend is worrying: “The incidence rate has doubled in the past 25 years; there is no other chronic disease in childhood and adolescence that progresses so rapidly,” says Neu. Researchers are still in the dark about the reasons. Possible explanations include environmental influences or changes in infant nutrition.
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Recognizing and correctly interpreting symptoms
Recognizing Type 1 diabetes in children and adolescents is based on noticing simple symptoms–a drop in performance, frequent drinking and urination, and weight loss are among them. If such signs are present, rapid diagnostics should be conducted, advises pediatric diabetologist Prof. Andreas Neu.
“The pediatrician measures blood sugar or urine sugar. This is done within a few minutes, and the diagnosis is made,” says Neu. Afterward, specialized medical professionals like Neu continue the treatment and therapy.
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Undetected, the disease could become life-threatening
The symptoms are not recognized in one in five affected children, estimates the physician. “Because the public is not well-informed, because the symptoms are not alarming. No one is bleeding, no one is in pain, no one is seriously ill.” In such a case, alarm bells should ring–for parents, caregivers, teachers, and everyone involved with the child.
Undetected, diabetes can lead to a metabolic imbalance that is potentially life-threatening. It manifests as headaches, nausea, vomiting, and in extreme cases, a diabetic coma, or unconsciousness. “The children may no longer be able to walk or stand and have impaired perception,” says Neu.
They experience the diagnosis far more dramatically than children whose symptoms are recognized in time and may be traumatized as a result.
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with material from dpa