Strokes in children: Self-help groups support families

Photo: Anja Gehlken

Anja Gehlken; © private

The "Marktplatz Gehirn" (The Brain Marketplace) theme park is an inherent part of the REHACARE. The subject of stroke is routinely a focal point here. And yet, many people in Germany don’t know that children – although rarely – can have strokes, too. Affected families primarily look for an exchange with self-help groups.

Anja Gehlken is the President of SCHAKI e.V., a self-help group for stroke children. Before the trade fair, spoke with her about the importance of self-help.

Ms. Gehlken, why is childhood stroke widely unknown?

Anja Gehlken: One reason is definitely the fact that strokes in children are very rare – approximately 300 children are newly affected each year in Germany. Yet the estimated number of unknown cases is likely significantly higher. Many strokes in children are not recognized as such though people are generally familiar with this subject. Almost everyone has a family member or knows a person in their circle of friends who had a stroke – and a large percentage of them are older persons. Most people associate an unhealthy lifestyle as the cause of strokes: smoking too much, alcohol and an unhealthy diet combined with too little exercise. All of these are things that are not associated with children.

Why is self-help so important for families with stroke children?

Gehlken: Since strokes are so rare in children, there is a manageable number of affected families. Even if the effects vary individually for every child, there are still many similarities. And that’s why it is very important for many families to compare notes with other parents – without the need to explain much so the other person understands what this is about. Usually, pediatricians should be the first contact when it comes to questions about the health issues of a child. But since most pediatricians are not experienced with stroke children, they are typically not able to offer any practical advice. In this case, the parents themselves have become experts due to their own experiences and are able to support each other with potential help and information.

Photo: "Marktplatz Gehirn" (The Brain Marketplace)

The "Marktplatz Gehirn" (The Brain Marketplace) theme park is a popular meeting point also this year; © beta-web/Lormis

What types of self-help groups are there today and which ones do families and the children themselves prefer to use?

Gehlken: The "classic" self-help group that meets one to four times per month and always at the same place does not apply in our case. The distances are simply too great: the area our SCHAKI families live in for instance reaches from Aachen to Braunschweig and from the Sauerland to the North Sea. Yet there are groups that meet more or less regularly. Overall, SCHAKI is definitely the most active of currently eight groups nationwide. An exchange via social networks also plays a prominent role – most notably via Facebook where there is a group with more than 165 members and where our SCHAKI fan page reaches almost 700 additional interested parties. Another big online advantage is the option of networking at any time: when parents have urgent questions, they can ask and usually there is someone who can give advice or at least offers encouragement.

Actual meetings for the entire family – affected children, siblings, parents, grandparents – are always real highlights, of course. Here, people understand you and nobody feels they need to hide or pretend. Everybody is equal here – despite their differences.

What role does the REHACARE play in supporting families of children who have had a stroke?

Gehlken: The REHACARE is an excellent forum to obtain information about the many different options and resources available in the marketplace. Many competent contacts and the latest information on strokes can be found at the "Marktplatz Gehirn" (The Brain Marketplace) theme park. What’s more, the trade fair is a great opportunity to meet other families in the support group in person again and compare notes.

At 2 pm Anja Gehlken talks about SCHAKI in Hall 3, Stand 3F44
More about SCHAKI e.V. (only in German) at:
Photo: Nadine Lormis

© B. Frommann

The interview was conducted by Nadine Lormis and translated by Elena O'Meara.