More and more children are suffering from type 1 diabetes. The carelessness ends abruptly for them. An example of what this means for those affected and their parents.
Climbing, dancing, athletics – 14-year-old Michelle Reinhardt from Coswig loves movement and sporting challenges. But she has to be careful with it. For diabetics like you, exertion quickly leads to hypoglycaemia. And that can be life-threatening. She knows the risk because she has had this disease for seven years. “Michelle can already manage her life very well,” says her mother Nadine Reinhardt.
If she feels hypoglycaemia, she needs to rest and take glucose to stabilize her blood sugar level. Her peers, who don’t know the disease, look at her crooked. Not today. The children and adolescents who let off steam with her in the Kamenzer Kletterhalle today belong to the “Zuckerkids” group. All of them have diabetes type 1.
“About every two months parents and children meet for such diabetes weekends. For the children, the focus is on having fun,” says Ralf Tetzner, who heads the group. “Donkey riding, Indian weekends – we always try to find something exciting for the children that they don’t experience every day. It is important that they are a community and are not left alone with their fate of having to inject insulin and calculate carbohydrate units. But parents can also strengthen each other. They have the opportunity for exchange and training.
The “Zuckerkids” were recently honoured with the self-help prize by the Association of Substitute Insurers for this commitment. The “Zuckerkids” can use the 3000 Euro prize very well. “We always take diabetic children from a children’s home in Apolda with us on our diabetes weekends. They and our children can go with us free of charge,” says Ralf Tetzner.
The parents also long for the exchange so as not to despair, as Nadine Reinhardt tells us. Each family has its own experiences. “Michelle had to change schools because the parents of her classmates have spoken out against her splashing in the dining room. We were beaten to the head. With modern pens these days, hardly anyone notices that,” she says. But it didn’t help. Now Michelle goes to a private school. Other parents also have problems finding a school or kindergarten for their diabetic children. They even move for it. “A family was not allowed to send their child to school because they could not bring an integration assistant to remind the child to measure and inject. So the mother stopped working and sat down with her child all day long.”
It is also impossible to get nursing services that measure and inject the little ones several times a day. The few nursing staff that exist are fully utilised. And the daycare centers are so popular today that they no longer have to care for children, says the group leader. “For the parents these are enormous cuts. Medical care is the next controversial chapter. “There are so many great achievements, such as insulin pumps or measuring devices that continuously measure blood sugar. They could really make life easier for diabetic children. But you have to fight for everything,” says Nadine Reinhardt.
For months she was in litigation with her health insurance company to get an insulin pump. Her daughter had to inject her seven times a day, mostly at night. “Try to explain that to your children.” But she doesn’t want to complain, because Michelle carries her fate with great reason. But she also knows parents from the group who have to hold their child together to inject it. “And that seven times a day. This is an ordeal. If there is any relief, children would have to get it first, without fight and lawyers. After all, they have to cope with it all their lives,” she says.
“In the group, the parents also exchange strategies with the insurance companies and encourage each other. But each family has to fight on its own,” says Ralf Tetzner. He always shakes his head when it is said that one can live well with diabetes type 1 today. “Only those affected know what this really means.” The “Zuckerkids” currently have 78 members. In the future, they will probably not have to worry about influx, because in recent years more and more children have fallen ill with diabetes type 1. In this metabolic disease, the body attacks and destroys its own insulin-producing cells in the pancreas. “The number of new cases is rising dramatically, especially among younger children,” says Dr. Ralph Ziegler, Chairman of the Children’s Diabetology Working Group. “Every year, the number increases by at least four percent,” he says. Why? One can only speculate about that. Certain viruses are suspected of upsetting the immune system. The genes also play a role, but a smaller one than in diabetes type 2. Only every second type 1 diabetes child has other diseases in the family,” says Professor Rüdiger Landgraf of the Diabetes Foundation Munich.
Michelle is also the only one in her family with diabetes. It started with her at the age of seven. She was always thirsty, was dull, lost weight, often had to go to the toilet at night and the rings under her eyes became longer and longer. “When the pediatrician diagnosed her, it was a shock,” says the mother. If these symptoms occur, 80 percent of the insulin-producing cells have already been destroyed, her paediatrician said. There is nothing more that can be done to reverse the process. “Diabetes cannot yet be prevented. The disease is fateful, you have to learn to cope with it,” says Ziegler.
The success of the Dresden University Hospital gives hope to those affected. There, babies can be tested immediately after birth to see if they have a certain gene that can promote the onset of diabetes. Even a diabetes vaccination does not seem to be that far away anymore. Children with this genetic alteration can be given tiny doses of insulin to protect the pancreas. “That would make me happy for the many other children who are no longer restricted by the disease,” says Nadine Reinhardt.
Unfortunately, research is too late for today’s “Zuckerkids”. When most of them have got used to life with their disease, they will have to choose their career at some point. A boy wants to go to the police. That was always his dream, as his mother says. But as a diabetic there could be problems. “Usually only the most healthy are taken. However, she had read about a verdict in which a young man with type 1 diabetes filed a lawsuit against his rejection and was proved right. Her son immediately applied for an internship. The fighting of the diabetes parents will probably not stop for a lifetime. rnw