I thought it best if I didn't climb onto my soap box for a while as my last question about sun cream went a little crazy.
So now I'm just going to ask if anyone uses any other sites on Facebook? I use, "People who had liver transplants in the UK" which is a closed site but interesting all the same. It's not as restrictive as this site, and there are a lot of people who used to use this site but for some reason no longer do.
For Auto-Immune Hepatitis patients, loved ones and carers there is fantastic support to be had on the AIHUK page on Facebook :- facebook.com/groups/AIHorgUK/ 1114 members and climbing. Also, group is supported by some of the top boffins and medics in the UK working in the field of Auto-Immune liver disease. Group also has regular organised get togethers/conferences to which the top boffins speak. Members have also gotten together on a social basis in smaller groups across the UK to support one another.
It's another closed group and is fantastic.
Same site that AyrshireK links to. Very informative and well moderated. Closed group so nothing appears on anybody else's timeline.
A while ago I used to be on Facebook there was a site concerning liver transplants. The site was world wide, it was interesting seeing how different countries treated transplant patients.
I am on several. The main one I am in is mostly American but with English people too , very interesting and very supportive too. I even notice the differences in how their hospitals work, their medication and views I am also on a few alcohol support groups as I find when I help others that keeps me stronger
Yes I am on a few , and an admin on one too. The sites do vary , some are very specific to causes of cirrhosis , or aspects of liver disease. They have been brilliant to expand my knowledge base, and different global systems and some tips too. Many do share their blood test and scan results, which is not forbidden , and many find helpful as it enables them to understand what they mean , and also involves them more which in turn encourages people to take responsibility of their own health . Most I belong to are all global and closed. I think people need to test out what suits them , one group may be more to their liking than another . The admins as a whole are great , stepping in if needs be , often they are sufferers or carers too , so they have a ful understanding not just physically but emotionally and intellectually too. Not the easiest job to do on a voluntary basis , no one I know of gets any payment , ads being forbidden too, especially when sometimes you have people who are having an HE episode, or sadly their time is drawing to a close. They are a great place to hear of some wonderful recoveries from impending death to a relatively normal life with cirrhosis. Stories about transplants, and watching someone come back to full health . I would say try them and see , you have nothing to lose. I too have considered leaving this site , athough I will maintain being here for a little longer.
I saw your feed Richard....well a few of your feeds that day. I think you just caught people at the wrong moment. I used this site more than FB, I don't really post of either of the FB groups I am attached too...gets a bit too much at times, especially when everyone thinks they know best. Here it's great everyone seems a bit more understanding.
Im also on that fb page too Richard x
Cirrhosis confusion and medication for other conditions (cortisone injections)
Clear liver on ultrasound but GGT and other markers rising.
Can anyone signpost me to a UK website about liver fibrosis?
Raised ALT and GGT after surgery but worried about Hepatitis/other illnesses
fibroscan score and other scores
