Rare diseases when children develop dementia

Those who think that only old people are affected by dementia are mistaken. Also about 700 children in Germany suffer from dementia. Frank Stehr of the NCL Foundation wants to promote research and thus help not only children with the disease, but also adults.

Rare diseases when children develop dementia

The overview with background: interviews, reports, reviews – with original interlocutors.

It starts harmlessly. At school, the child no longer recognizes what is written on the blackboard. You take it to the eye doctor. No need to worry, says ophthalmologist. The child gets glasses, maybe also a medicine. But the glasses don't help, the medication doesn't work. The child sees worse and worse. People rush from doctor to doctor, but no one knows what is going on. "Children go blind in one to three years", explains Frank Stehr of the NCL Foundation. And that is only the beginning of the disease, explains the physician:

"Then all of a sudden, due to the onset of dementia, because the nerve cells in the brain are dying off, school difficulties suddenly arise. This means that the children are just learning to calculate and write and suddenly have problems remembering it. Some parents of affected children say, I wish I had known this before, I put my child under unnecessary prere."

The fatal disease is rarely recognized

Dementia in children is a rare disease. According to estimates, about 20 children fall ill in Germany every year. Because the disease is relatively unknown, it is often not recognized by doctors either. By the time parents find out that their child has dementia, they usually have a medical odyssey of several years behind them. The NCL Foundation therefore wants to raise awareness. It informs doctors, ophthalmologists and affected people about the rare disease. If a doctor prescribes the wrong medication, the disease can worsen in the affected children.

"Ophthalmologists do not suspect that this is a fatal childhood disease. And they confuse just this visual impairment with other eye diseases."

The children become severe care cases

In addition to doctors, the foundation also informs the parents of children with the disease about the disease. Many parents do not know that the various forms of juvenile dementia are genetically determined. If a child in the family has NCL, the most common form of juvenile dementia, there is a 25 percent risk that other children in the family will also be affected by the disease. At first the children develop normally, only at school age the disease begins with a visual impairment, as a result of which the children go blind.

"There are then further regressions in the course of the disease, further regression, the motor function suffers, a loss of the ability to speak is added and then also epileptic seizures. These children or adolescents become very serious care cases and none of the patients live beyond 20, maximum 30 years of age."

Enzyme therapy raises hope

To date, there is no cure for children suffering from dementia. The NCL Foundation wants to change that. Funded by donations, she not only provides education, but also organizes scientific meetings and tries to advance research. An enzyme therapy approved in July 2017 is raising initial hopes that the disease NCL-II could be successfully treated in the future, explains Frank Stehr:

"The treating physicians have been able to show that in the treated children, who were all still in an early stage of the disease, that one could show here with different symptoms that in the treatment period a stop really took place."

Frank Stehr hopes that the enzyme therapy will also have a long-term effect on the children suffering from the disease. Should the research results be positive, perhaps even important impulses for the treatment of adult dementia patients could be gained from it.

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