Yes, Mr. Shannon there is a Support Group. It’s all of you! But seriously, there are a bunch of support groups for liver disease and transplantation. Here’s a list of outreach areas that I know of:
- Facebook (which we are not a part of) Groups;
- Yahoo! groups
- TransplantLiving.org (a service of UNOS)
- Lahey Hospital has a Hepatitis Support Group
- The American Liver Foundation
- PSC Partners Seeking a Cure
And, of course the Transplant Games of America. I did not expect to see the variety of events including Cornhole and Trivia Challenge. I haven’t reached out to any of these support groups recently. I have been to the American Liver Foundation walks and a few of the yearly discussions. The focus was on the major liver diseases, Hepatitis and Cirrhosis, and I felt I was in the very small minority of the population. I did meet a few people with PSC at the events, but never followed up. I also tried online support – the Yahoo! PSC group specifically. I could see it was an outlet and extremely useful for others but it was not for me. Telling my feelings to a group of strangers isn’t helpful to me. Neither is listening to other people’s issues or feelings. Any social setting where you sit in a circle – literally or figuratively – and communicate makes me extremely uncomfortable. What does help me and provides comfort on a daily basis is knowing a support group is out there. My grandparents live near someone who had one of the first liver transplants and is still living many years later. My relatives work with another person who had PSC and recently had a successful transplant. Logan emailed Chris Klug and he responded. A guy at work was diagnosed with PSC years ago and now shows no symptoms of the disease – possibly a misdiagnosis. I find and read internet blogs of people diagnosed with PSC or liver transplant stories. I know I can contact any of the people mentioned above and they would respond. I know the support groups exist if I need one. I also know I can contact anyone reading this blog, or any of our wealth of friends and they would drop everything to help. That’s my support group and I am thankful for it.