In my last newsletter I commented that I was proud that one of the things we do is help people die. Members who have followed me for a while got it but I made some newer folks uncomfortable so as a way to start the new year I thought a look at real life might be useful.
With any serious disease we walk a line between living with it or dying from it. An advanced liver disease diagnosis often comes as a bolt from the blue. You go into the doc, perhaps not feeling great but with some expectation of your future, and are told that you face end stage liver disease. The person who entered that room dies with that pronouncement. Whatever future you imagined you might have is gone and some other path must be found. For many there is a profound sense of loss and untethered fear. As the disease moves steadily to younger people we find this burden of the old is now frequently striking families with young children. Parents who thought of themselves in their prime years are suddenly confronted not only with their own mortality but what of the children.
It is the person suddenly thrust onto this toboggan ride to hell that we feel the most kinship with. These are the people who need help with dying. In the normal course everyone will consider their death but it is usually in a fuzzy context and we compartmentalize that inevitability and live our lives. An end stage disease diagnosis is rather like standing before a firing squad with guns aimed at you but you don't know if the order to fire will be this week, this year, or even years away. But it is the pronouncement of stage 4 that focuses the mind and breeds a persistent fear.
The most important service we provide is to say take a breath. You have time. You have choices. You are not helpless. There are a lot of us in the same situation. Dr Google is a quack, don't go there.
Helping people come to grips with the fact that this may well kill them but it is not hopeless is the first step in learning how to die. We acknowledge the risk but we also offer the numerous examples of people who are being successful. We learn to live our lives on our own terms as part of a community that battles a common enemy. We have growing numbers of people who are successfully managing this disease for extended periods and that knowledge, even though medicine says there is no treatment, is key to managing the grief attached to a fearsome diagnosis.
Coming to grips with the risk of dying from liver disease is the key to learning to live with liver disease. Pollyanna was a two bit hustler in the game of life. This is serious business but knowledge can set you free.
If you know someone who might benefit from learning about us or who you think might be supportive please feel free to forward this to them. Here are some links to information that might be of value as an introduction to the foundation.
I recently was a guest on the Surfing the NASH Tsunami podcast and had an opportunity to talk about our SUNN study. If you like podcasts I recommend this one. Here is a link to that program.
Our SUNN Study (Screening for Undiagnosed NAFLD and NASH) report has been published and is now live on PLOS ONE, an international, peer-reviewed, open-access, online science publication. You can read it by clicking the link below.
Screening for undiagnosed non-alcoholic fatty liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH): a population-based risk factor assessment using vibration controlled transient elastography (VCTE)
The Fatty Liver Foundation has launched a public private partnership fund with the long-term goal of screening a million asymptomatic, undiagnosed individuals a year for nonalcoholic fatty liver disease (NAFLD). The SUNN Study was the pilot for that effort. The next step is SUNN-2 with a goal of screening 20,000 people
If you would like more information click the image below.
This fund will provide a mechanism for public and private funders to join together in common cause with the patient community. By joining together we can work with local communities in finding ways to engage this threat at the only truly effective level, that of the patient within the life that they lead and the reality of their community.
We hope you are happy and safe in this very unusual holiday season.