Posted 4/28/2021 5:31 PM (GMT -6)
Been lurking for a while, first time posting.
Currently in a long process of checking out my liver and getting a dx-15 years of heavy drinking, massive weight/muscle loss, loss of coordination, spider angioma, major fatigue, etc., etc. and I'm pretty sure where this is headed. Doing the main things--quit drinking, getting counseling, trying to get a referral to a hep at a major transplant center.
Aside from that, been feeling devastated. I'm quite young, 38, and the life I imagined even 4 months ago seems out of reach for good. Crushed my family. I do appreciate the many positive stories here. That said:
Is any one aware of any patient-run/focused liver advocacy groups? The ALF and AASLD are fine, but are a bit removed from the immediate needs of liver patients. And there are so many. I'd like to get involved ideally in a patient group that pushes its own research agenda and policies, one focused much more on ESLD.
It would be nice to work with others in a similar situation to fight liver disease, and not just lay in bed most of the day with too little energy or focus to do anything meaningful other that wait for more complications. Sorry for the long first post.