If you care about liver disease, you should read this. We need you to care and help

Announcing The State of NAFLD/NASH Care in America Survey

This 2022 State of Care Survey is the inaugural annual survey to understand the state of care for NAFLD/NASH as experienced by patients. It will establish a baseline to monitor year-to-year changes in disease management progress. For more information, see the full press release here.

We see alarming numbers of people in their 30's being diagnosed with liver disease. Tragedy at any age but many still have kids to raise. Did you know that liver disease is the number 4 killer of 45 year olds? We are asking for your experience in this survey, anonymously, of course.


The patient community is very large, but a broad understanding of the challenges we face is lacking. There are 100 million of us with liver disease and stories to tell but most are only recognized in the late stages. We believe that is wrong but a first step is to have the data. We don't have a national benchmark or tracking system to understand the problem broadly or to know if it is getting better or worse. That harms us as patients.

The Fatty Liver Foundation is undertaking an annual patient focused survey to gather baseline data that many people can use to support advocacy and measure change. Click the image below to take the survey or scan the QR code.

You can also click here to take the survey in Spanish.

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It is important that you participate as this request is by patients for patients and we are not trying to sell you something or to get you to participate in some program.

We are a patient group, we offer our services free to all who might be interested. The system mostly ignores us as individuals but if enough of us are willing to combine our voices we have a chance to be heard. When I think about the lives that the chart above shows are being lost prematurely, and I think about my personal struggle for diagnosis, I feel that I must at least complain. No one listens to me as an individual, but they might listen to us.

We have become accustomed to so many people having the preventable diseases of our industrial society that we stop thinking about the consequences. As liver patients we are central to the great wheel of comorbid illness and yet little attention has been paid to it in the past. This effort to document our experiences as patients is an effort to bring light to this dark place and we really do need your voice so please consider taking the survey.

When you are dying slowly of chronic disease the system doesn't care much. There is no lobbyist for you. The money train doesn't run for you. Come back when you are a proper billable code they say.

In many ways the periods before and between the acute events that medicine cares about are the most difficult. The seemingly endless hours of being unwell are the things with which healthcare decision makers, who are not yet themselves suffering, seem not to concern themselves.

We argue for early detection and wellness to be the goals but our system rewards heroic intervention instead. There is talk of wellness and like all things touched by politics and power it isn't the patient's success that really drives decisions.

Please help us collect this important information!

You can take the survey by clicking on the banner above or click this link to begin.

If you would rather take the survey in Spanish, please click here.

You can also find information on our website by clicking here.

Thank you for your support. Also please forward this to anyone you know who might be willing to participate or spread the word.

 


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