Spreading information
Nowadays it is very simple to get information out there on the internet. However I have noticed that the available info about syndromes such as Poretti Boltshauser Syndrome is very limited. This does make sense given a very small amount of people are affected by it. However it can be very frustrating for someone who just got the diagnosis, or for a parent who just got their child diagnosed with this syndrome.
When I started the website porettiboltshausersyndrome.info there wasn’t any information about the syndrome online that you could actually understand at first glance. Most websites had the medical terms about PBS ready and everyone who reads things like “cerebellar cysts” or “underdevelopment” gets a little worried. It is my goal to make people understand what it really means to have this syndrome. And to make children understand it too. They are the ones who have to navigate in this world, set boundaries for their energy levels, ask for help when needed. But how do you learn this?
It all starts with knowledge. Knowledge that I will share, to my best knowledge. Because everyone with this syndrome is unique and I cannot tell you all what to do, and guarantee that it will work. I tried some things too in the past, that did not work for me. And that is okay. As long as you find your own way.
The knowledge that I will be sharing, will be based on my own experience combined with help from medical professionals and also physical therapists and other therapists that have helped me throughout the years.
I hope that we can build a community together where everybody feels seen and heard.