I’m so excited…..

…..about the new online communities for those affected by Paediatric Liver Disease!

Liver Families
The first place that I found people who I felt understood what it is like to live with BA was the CLASS forum. It was fantastic. A group of people with so much shared knowledge, understanding, and empathy.

Most people (including myself, pre-Hannah) don’t really know what the liver does, what bile is, or indeed anything of the medical minutiae. This means any conversation has to be started with a recap of the main facts. When you talk, virtually or otherwise, to someone who knows what all the medical stuff means, you feel liberated.

For nine months, the CLASS forum became like a second home to me. I wasn’t a prolific poster, but kept up with the kids’ updates every day, and learned so much about life with liver disease in its whole myriad of forms. When I had a question, I could go there. I always responded to posts where I felt I had some useful input.

In September, the CLASS forum was shut down for a short period. I don’t know enough about the reasons for this to debate it. The overall effect was that it was never the same again; the sense of family, of community, had gone.

I was far from the only person to feel sad about this loss. A temporary home was set up. And then it became time for a new forum. So things happened. And now, thanks in the main part to Dorothy and Mika, (but also to Amanda and Marisa) those of us affected by paediatric liver disease have a wonderful, amazing, fantastic new home.

It is fantastic! Amazing! Wonderful! Brilliant! Thank you all, from the bottom of my heart.

Invitations have gone out to those signed up for the ‘temporary home’ and others will get them within the next few days. In the meantime, go on and sign up!

Paediatric Liver Disease UK
This is much simpler and on a much smaller scale, but I’m still just as excited! It’s an email group where families in the UK can discuss issues specific to our medical, benefits, education system etc. We already have 20 or so members and it is FAB!!!! Anyone interested is welcome.


I'm also excited about....
....Hannah’s feature on Babyworld. The journalist is working on it now and I am awaiting to hear when it ‘goes live’.