Central Core Disease – got some info but not sure what prognosis is

I know a friend who has been diagnosed with Central Core Disease since early childhood (18 months). He goes for regular annual checkup with a consultant Neurologist who he is not showing any signs of deterioration and that his condition is mild form of CCD non-progressive with normal life span. He is now around 27 years old.

He does have difficulty walking up stairs and some observable difference in his gait whilst walking, otherwise generally OK.

There is not much info on this on the internet and not really anyone to speak to about experiences later in life in terms of physical or emotional aspects. Just relying on doctors is fine to a point, but it is worrying for the future as he is looking to get married and being congenital condition it has the potential to affect any children.

Really would like to hear experiences of others who are in a similar situation and whether the diagnosis of ‘non-progressive’ turned out to be correct or not. Also experiences on how family has coped with this. Any help appreciated please.

Thanks