Climbing, dancing, athletics – Michelle Reinhardt, 14, of Coswig, loves movement and sports challenges. But she has to be careful. For diabetic patients like her, effort quickly leads to hypoglycemia. And this can be fatal. She knows about the risk because she has had this disease for seven years. "Michelle can manage her life very well," says her mother, Nadine Reinhardt.
If she feels low blood sugar, she needs to rest and take glucose to stabilize blood sugar levels. Of colleagues who do not know the disease, it is already seen in the wrong way. Not today. After all, the children and adolescents who mutiny with her in the Kamenzer Kletterhalle today belong to the group "Zuckerkids". Everyone has type 1 diabetes here.
"Every couple of months, parents and kids get together for these diabetes weekends, and fun is the focus for kids," says Ralf Tetzner, who leads the group. "Donkey rides, Indian weekends – we always try to find something exciting for the kids, something they do not try every day." Importantly, they are a community and are not alone with their fate of injecting insulin and calculating carbohydrate units. But parents can also strengthen one another. They have the opportunity for exchange and training.
For this commitment, the Ersatzkassen association recently honored the "Zuckerkids" with the self-help price. 3000 euros are attached to it, which the "Zuckerkids" can use well. "In our diabetes weekends, we always take diabetic children from a children's home in Apolda, so you and our children can walk for free," says Ralf Tetzner.
Parents also yearn for exchange, not for despair, as Nadine Reinhardt says. Every family has its own experiences. "Michelle had to change schools because the parents of her classmates were against injecting themselves into the dining room, we were shocked, and almost no one in the modern day pens accomplishes this," she says. But that did not help. Now Michelle is going to a private school. Other parents also have trouble finding a school or crèche for their children with diabetes. They even move to that. "A family was not allowed to enroll their child because they could not bring an integration assistant to remind the child to measure and inject, so the mother stopped working and sat next to her son all day."
Also to get care services that measure small ones several times a day and inject, is impossible. The few nurses that exist are fully utilized. And kindergartens would have such passion today that they would not have to worry about children any more, says the group leader. "These are huge cuts to parents." Medical care is the next controversial chapter. "There are so many great achievements, like insulin pumps or meters that continuously monitor blood sugar, which can make life easier for children with diabetes, but you have to fight for everything," says Nadine Reinhardt.
For months she was in litigation with her health insurance to get an insulin pump. His daughter had to inject it seven times a day, usually at night. "Try to explain this to your children." And she does not want to complain, because Michelle carries her fate with great reason. But she also knows parents in the group who have to keep the child together to inject it. This is torture, and if there is relief, the children would have to get first, without fights and lawyers, because they have to deal with it all their lives, "she says.
"In the group, parents also talk about coping strategies and courage, but every family has to fight for itself," says Ralf Tetzner. He always shakes his head when he says you can live well with type 1 diabetes today. "What this really means, only the affected know." 78 members currently have the "Zuckerkids". In the future, more and more children will become ill with type 1 diabetes. In this metabolic disease, the body attacks its own insulin-producing cells in the pancreas and destroys them. "The number of new cases is increasing dramatically, especially in younger children," says Dr. Ralph Ziegler, president of the Pediatric Diabetology Association. "At least four percent more each year," he says. Because? You can only speculate about it. Certain viruses are suspected of confounding the immune system. Genes also played a role, but less than in type 2 diabetes. Only with each second type 1 diabetes, are there other diseases in the family, "said Professor Rüdiger Landgraf of the Diabetes Foundation Munich.
Michelle is also the only one in her family with diabetes. It all started with her at the age of seven. She was always thirsty, she was ungrateful, she lost weight, she often had to go to the bathroom at night, and the dark circles became longer and longer. "When the pediatrician made the diagnosis, it was a shock," says the mother. If these symptoms occur, the insulin-forming cells are already 80% destroyed, his pediatrician said. There is nothing else to do to reverse the process. "You can not avoid diabetes, the disease is fateful, you have to learn how to deal with it," said diabetologist Ziegler.
Hope for those affected the successes of the University of Dresden. There, babies can be tested immediately after birth to see if they have a specific gene that can promote the onset of diabetes. Even a diabetes vaccine does not seem to be so far away. Children with this genetic modification may receive small doses of insulin to protect the pancreas. "That would make me happy for many other children, who are no longer limited by illness," says Nadine Reinhardt.
Unfortunately, the search is too late for today's "Zuckerkids." When the majority became accustomed to living with the disease, the choice of career ended. A boy wants to police. That was always his dream, as his mother says. But as a diabetic, there can be problems. "There's usually just too much health." However, she read about a verdict in which a young man with type 1 diabetes complained about his refusal and was right. Her son then immediately applied for an internship. The struggle of parents with diabetes probably will not stop for a lifetime. RNW