"The one thing I wish I had been told when I was first diagnosed..."

[mrsmerlin]

I was given a lot of information by my hepatologist, I realise that I'm lucky with this.

So my regret isn't direct to me.

I wish I would have been is information for my family especially my grandchildren. When you're having a flare with the joys of new symptoms, they're confused about why I'm yellow or sleeping so much.

They really don't understand why Nanny can't be around them when they're ill.

I have found a leaflet but it doesn't make sense to a child. Can someone write a story book to read with them?

I have learned it's way worse for people who love me than it is for me and I wasn't prepared for how much

[mauschen]

I totally agree, you have raised a very important issue, the importance of family and friends who need information in order to help us or simply understand what's going on is in my opinion, crucial. With information, others can get us the help we need when we are not fit enough to get help for ourselves. They can support us if they know what we are experiencing and we can communicate our future plans with our loved ones if we are no longer able to make our own decisions.

A book for children is a great idea mrsmerlin, have you thought about writing one yourself, after all, you are the expert!