The International CCHS Conference has just finished.
It was held at a hotel located one minute away from Leohome :-)
Doctors, parents and people with CCHS from all over the world attended.
It was intense. Tens of hypotheses, opinions, questions,
cases, stories, doubts and pieces of advice.
Often contradictory.
There is still no clear path.
Some say that patients should be monitored at all times,
others persuade to try to live normally; some recommend masks,
others criticise them, and so on.
The comparison of Polish standards in attitude towards patients
and their families with world standards gives some miserable conclusions.
No less depressing is the list of possible complications in CCHS:
But there is also good news:
there will be a Polish CCHS Association.
We will fight for better life!
And Leoparents simply have to mention that Leo’s fame has reached United States.
Dr Debra Weese-Mayer from Chicago has called Leo the Polish CCHS ambassador,
and even included an Easter photo of him in her presentation. :)))
