The story is written for all affected children and the people in their immediate environment who are interested in the topic of hydrocephalus and spina bifida in children. Rare diseases like these, about which little is known in everyday life, need more attention so that even young patients can better understand and, most importantly, be better understood!

The story “Karl's Guard” tells of the challenges of hydrocephalus and spina bifida and the differences in the experience of these rare diseases. The book is colorful and designed with loving details, inviting children to immerse themselves in the colorful world of the protagonists and to deal with the challenges that hydrocephalus and spina bifida can bring in an almost playful way. The children's book is intended to encourage even the youngest children to be curious and ask questions. 

“Karl's Guard” is also about variety, diversity, the importance of listening and friendship, mindfulness and understanding what is happening in one's own body. We all need support sometimes. We all need friends. And we are all different and that is not only ok, but very valuable and complementary.

A “valve guard” - or valve - is used in hydrocephalus therapy to regulate how much excess cerebrospinal fluid is drained. We affectionately call the valve in the children's book the valve guard because it acts like a watchdog to ensure that not too much or too little cerebrospinal fluid is drained. Some valves are already very easy to adjust from the outside so that it is possible to change how much cerebrospinal fluid should be drained later on. This can be important if the hydrocephalus changes - for example, because children are still growing.

There are many sources to learn more about hydrocephalus. For example on the hydrocephalus pages of MIETHKE. 

National patient organizations are also a very good point of contact, which also offer exchange, seminars, experience reports and much more. In Germany, we recommend contacting the Arbeitsgemeinschaft Spina Bifida und Hydrocephalus (ASBH), where you can find extensive information about rare diseases, treatment options and further support. In the UK there is Shine or Harry's HAT or in the USA the Hydrocephalus Association (HA). It is worth looking for such organizations in your own country.

If you would like to find out more about our valve technology from a technical and scientific point of view, we recommend the MIETHKE Journal.