Type 1 diabetes is connected by name alone with the disease commonly associated with a grandfather or grandmother. Few people know that type 1 diabetes takes its greatest toll among the youngest. Infants, preschool children and schoolchildren—these are the groups in which the greatest number of life-changing diagnoses are recorded.
What is type 1 diabetes? For previously undetected reasons, apart from genetic ones, the human immune system acts negatively against the beta cells in the pancreas that produce insulin, destroying them irreversibly. The lack of insulin in the body prevents the burning of protein, carbohydrates and fat, which leads to death. One thing is 100% certain: type 1 diabetes does not develop because of a poor diet, excessive sugar consumption or a lack of exercise. An uninformed society harms children and their parents above all by presenting theories that illness results from eating too many sweets—ideas based on sheer ignorance.
A child with type 1 diabetes, a diabetic, does not appear to differ from their peers, except that they constantly carry a personal insulin pump, through which insulin doses calculated for meals are administered. The same method is used to correct elevated blood sugar levels (hyperglycemia). Children without a pump use injections known as pens, through which insulin is injected into the body. A preschool or early-primary-school child is unable to calculate a meal and match the correct insulin dose independently; this function is taken over by a parent or caregiver. Drops in blood sugar (hypoglycemia) manifest differently in every child. Sudden loss of consciousness, fainting, cold sweat, apathy or convulsions are the most common indications to those around them that a diabetic needs our help. That is why the role of parents and caregivers in diabetes therapy is so important—not only at home, but also in educational institutions and elsewhere.
The parent of a small child with type 1 diabetes is, besides fulfilling their maternal role, also a diabetologist, pediatrician, nurse and psychologist. They do this without years of university study, after only several days of training. Parents bear responsibility, day and night, for their children’s lives and survival. Type 1 diabetes is a disease affecting the entire family. After the diagnosis, the world is turned upside down.
For three years, I have run a support group for parents of children with type 1 diabetes on Facebook, a social networking site (“Type 1 Diabetes in Children: Let’s Help One Another”). I observe the divisions and differences made by assessors toward young patients when disability certificates are issued. I see the anger and hatred directed by society at parents who receive nursing-care benefits and who, since the diagnosis, have unfailingly stood guard over their children’s diabetes so that they can respond when needed. These parents—often single mothers whose relationships were broken apart by diabetes—do not sleep at night so that their children can sleep safely; they camp out in school or preschool corridors so that their children can participate in life alongside their peers. These same parents travel hundreds of kilometres to attend check-ups with a pediatric diabetologist because the limited number of specialists forces them to travel long distances. These are just a few examples from the life of a young diabetic. So little is needed to end the discrimination and stigmatization of people who did not apply for and did not ask for this incurable disease (as things stand today); it came unexpectedly and stayed. Type 1 diabetes can affect anyone, regardless of their worldview, religion or social status.
This cannot be predicted, but one can prepare for it, learn more and help those who, when their blood sugar is high, must answer questions such as: “Mummy, can I have one gummy?” “No, sweetheart, you can’t, because your blood sugar is high.” “Mummy, but can I just lick it?”