"This board is for giving correct and helpful advise to the patients as well as others."
Fully agree. Patients who visit these boards might well go on to search locally for a homeopath. With that in mind what patients need is solid advice and guidance on:
- how to find the best homeopath for their needs
- what questions to ask to ensure that this is the case
- a realistic assessment and expectations based on that (experiences of other families would help).
I am not sure about preventative treatments - for example, children in my own family will as yet have no symptoms and (given that this is an autosomal dominant gene) stand a 50% chance of not having the disease anyway. Is there anywhere patients can read more about this? It is always good to have more information to enable us to evaluate things prior to making decisions.
"Systemic treatment means to treat the system (here the system is renal system)." This is mostly but not invariably the case. What about PKD patients whose worst experience has been ruptured aneurysms or massively enlarged liver?
It is also worth noting that not all PKD patients have a family history of PKD. A significant minority acquire PKD as the result of a random mutation (and so would not be able to take advantage of preventative treatments anyway).
More information would be welcomed - this is an area where I feel it would be particularly useful to shine some light. If there is one approach which works best for PKD and patients are aware of this and which questions to ask to ensure they get it, then perhaps this is something that all patients affected by chronic disease (including genetic disease) can use to good effect. That'd be great!