What to expect from this blog

Things I want to achieve with this blog

       

1) I want to encourage parents of disabled children to do difficult seeming things like going on a holiday or going on a trip anywhere (becaus those things which are natural to others aren´t natural to us any more)
 

2) I want to sensitize others for the needs of disabled persons
   

3) I want to call attention to Tuberous Sclerosis, a rare disease wich is, in my experience, paid attention to too little.  Prevalence is estimated with 1 : 20 000, but frequency of occurence might be underestimated by colleagues. The estimated number of unrecorded cases is high. Hence, there´s still the risk of kids suffering from TSC, because of unknown disease of their mother or father - who transmitted TSC - with fatal consequences to the kid.
   

4) I want to point out possible sources of error by means of case reports to enable my fellow doctors to avoid them.
  

5)  I will try to translate what I´ve published in my german blog "Tuberöse Sklerose und Wir" whenever I can, as far as it might be relevant to english speaking audience. I do have a thrilling job and lots of work with the kids, and it might take some time till I can publish the next article - specially those of our holidays. I will try to publish once a time every week, though, but stay patient, please. I´ll try my best 😉. Whenever you find mistakes in my essays, tellme about it. I´ll correct them as soon as possible. 


6) Whenever Facebook blocks my german blog, I will use this blog to enable my german speaking audience to read the articles they liked most in this place. Upload filters have blocked my first german blog, so that people can´t read anything there, as long as they use Facebook only for getting there.

        

   

What I won´t do in this blog

    

1) Blame doctors or hospitals for making mistakes. Therefore, all data will be anonymised, and it will be impossible to figure out who the patient or the doctor was, or in which hospital things happened. I do have contact to different hospitals / colleagues or patients, which enables me of chosing cases for my reports.
   

2) Write a diary about life with our kids. Other bloggers do this already, and very likely better than I could do this (e.g.:   https://www.facebook.com/tabeawebertsc/  , and I´m sure there´s similar blogs for english speaking audience.).
   

3) Publish an article  day (see above).