Hi. I'm recently diagnosed. Aplologies in advance for asking too many questions or covering old ground...
In my first face-to-face meeting with my UK NHS nephrologist I was keen to discuss genetic testing for ADPKD, as 2 of my 3 children (aged early to mid-30's) have already started their own families and are keen to find out if they have inherited ADPKD from me. They are keen to have further children, so they need to know the risks.
I had read that the usual approach in these circumstances would be for me to be tested, and then my kids would be tested, with my results used as an indicator for them.
I was surprised that my consultant was not aware of this approach and was reluctant to refer me to the gentetics team, suggesting they would usually reject such a request.
If anybody has experience on this topic in the UK I would love to hear from you.