Fatty Liver Foundation organizer

As a liver disease patient my goal is to help others understand, manage, or prevent the disease


  • COVID mutations, vaccines, chronic disease -- things you need to know

    Infection rates and vaccine failures - some points to ponder

    We have been seeing the headlines about the COVID tragedy in India as hospitals turn patients away and the nation runs out of oxygen as people are literally dying in line waiting to refill oxygen tanks. India faces a historic crisis and you probably imagine the densely packed cities and poverty are the cause. But wait, what about the REST OF THE STORY?

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  • published Bausch Health 2021-04-23 15:25:35 -0600

    Bausch Health

    XIFAXAN® (rifaximin) 550 mg tablets logo

    Contact for help accessing patient support and cost reduction programs.

    Scott Ritchey is an account executive who works with Xifaxan and patients suffering from HE.  I have discussed the problem that many patients have with insurance coverage and drug costs and he has volunteered to help people connect to the proper resources for free or reduced cost medication.  Here is his contact information.  If you contact him you can tell him that I referred you to him if you wish.

    Good luck

    Wayne Eskridge

     

    Scott D. Ritchey

    Regional Account Executive – Mid Atlantic

    [email protected]

     

     


  • I can see clearly now, the patient journey through liver land

    I can see clearly now (I love this)

    click here for a bit of fun

    but click on the image to register

    Our upcoming webinar is Wednesday the 28th at 12:00 EST. If you are a patient or care about what patients have to say you should register.

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  • published Voices 2021-04-11 17:38:52 -0600

    Voices

    Meagan's Place
    Posted by · May 22, 2019 6:59 PM

    See all posts

  • published Intent to diagnose in Voices - our blog 2021-03-14 11:31:04 -0600

    Intention to diagnose - does your doc intend to diagnose NAFLD?

    In the doctor/patient relationship there is a physician process which is called the "intention to diagnose". That may seem odd, but diagnosis requires a deliberate action by the doctor. You may be more familiar with the idea of the "intention to treat". You may have heard the argument that there is no value in identifying a condition if it can't be fixed and in that case there is no intention to treat so no intention to diagnose.

    As a liver disease patient you may have learned about your condition when you were fairly advanced. Why does that happen? Is it a lack of the intention to diagnose, a failure of diagnosis, inadequate tools or training, or is something else happening? We are hosting a webinar on Wednesday the 17th at 12:00 Eastern.  We will be discussing non-invasive testing with a couple of experts, Dr Mona Munteanu and Dr Stephen Harrison, and we will talk about the diagnosis problem and the several tools available for detection and monitoring

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  • published Ambassador Donation Portal in Wellness Ambassadors 2021-03-09 15:44:03 -0700

  • Non-invasive screening and genomics in NAFLD

    Sano_webinar_banner.png

    CLICK HERE TO WATCH A RECORDING OF THE WEBINAR

    We have had a series of webinars about the disease and cutting edge research.  Now we would like to focus on the future for the patient.  Covid wrecked our plans for SUNN-2, the next step in our plan to eventually screen 1,000,000 patients a year for liver disease, but with vaccines we can begin to think about that future.

    I'd like to invite you to a webinar where we will look to the future and some of the tools that are going to help us in our battle with the noncommunicable diseases that have become the scourge of our time. Let me challenge you to step back from COVID for a couple of minutes and think about health more broadly. One small step is to attend this webinar.

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  • Damned Liver, How do I monitor thee?

    COVID_vaccine_1.jpg

    I finally got a chance to get the COVID vaccine. As a guy with chronological superiority (fancy talk for I'm older than most) and a high risk category with NASH/cirrhosis this is a big deal.

    I keep seeing comments from NASH patients who say they are not going to get the vaccine. That is a risky strategy.  I understand the concern but even beyond the risk of dying from COVID, I personally am concerned about the long Covid symptoms that are being reported. Think about that.  You are dealing with issues now.  As a compromised patient, even if you survive infection, might the odds of lingering problems on top of what you already have be greater. That possibility concerns me and is part of why I want the vaccine.

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  • published wellness league consent 2021-02-20 11:47:14 -0700

    invitation to the SUNN Screen Project and wellness league consent

     

     

    The first project of the Wellness League is called the SUNN Screen project.  We want to gather blood tests of people with liver disease using the LIVERFASt (click here for more information) test as part of our project to encourage doctors to screen for asymptomatic liver disease.  Even though we know that about 100 million Americans have fatty liver disease the medical profession does not support screening for advancing disease absent symptoms. We believe that people should learn about their risks before they become ill. Our SUNN project is our effort to gather data needed to change that guidance.

    The first step is to consider becoming part of the Wellness League.  This consent form will allow our staff to contact you and provide you with all of the information you need.  This is not a public group.  It is intended to serve real people dealing with health and is not a place for lurkers or trolls.  The Foundation website is open to all. The Wellness League is patient only.

     


  • DUMMY, you never say what you think on the internet

    The times we live in can make discussion difficult. So much of what we see in the news every day is inflammatory and negative emotion stalks the land. I recently wrote about the importance of getting the COVID vaccine and I was not kind in my view of people who advise others not to be vaccinated. I got a bit of criticism for expressing my opinion. Knowledge can sometimes get past emotional responses so fair warning. I'm going to teach a small class here in how this virus and the vaccine really work. Stay with me, it is a really interesting story and matters to your health.
    covid-virus.jpg
    We have all seen these picture of the coronavirus with all the spikes sticking out of the surface. Interesting as an art project but that image only hints at what is going on. In this explanation we are going to dive into what really happens. Don't worry, life is infinitely complex but you can understand this.

    Lets look first at those spike proteins. Calling them spikes makes a headline that editors like but they are really more like ugly little mushrooms.
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  • Afraid of the COVID Vaccine? No No, You need this information

    I keep hearing from people who have decided not to get vaccinated or who are fearful of the vaccine and don't know what to do.

    I don't know if I can express how sad that makes me for those people and their families or how profoundly angry I am at people who promote fear about the vaccine without evidence.

    CLICK HERE TO WATCH A RECORDING OF THE WEBINAR

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  • Non-invasive blood tests for liver disease - an update

    What is the situation with blood tests for fatty liver disease today?

    NON-INVASIVE BLOOD TESTS SOME EXAMPLES

    NIT_comparison_large.jpg

    The table above was produced by Fibronostics. We have followed the development of their program for a couple of years and they are supporters of the foundation. The thing that caught my attention back in 2018 was that their test, like the earlier Fibrosure was the result of artificial intelligence studies.  A lot of AI is being done today but those two were early developers and I felt that this would be the future for us as patients.  The downside, of course, is that tests like these are proprietary so the costs are higher so the question of who should use them is more complicated.  For me, as a patient, I wish such tools had been available to me early on in my disease so that I might not have ended up as a cirrhotic.

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  • Thoughts at a hinge point in liver disease management

    Everyone writes uplifting letters this time of year. Personally Rosemary and I are doing well and our best hopes are for all of you as we speed toward the next chapter of our lives. The GRAND CONJUNCTION of Jupiter and Saturn reminded me of my youth and the AGE OF AQUARIUS.  Something for those with a few minutes for a bit of nostalgia.

    There are a lot of mixed currents in this section of the river of time that we find ourselves.

     

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  • Rob, we don't know what stage your NASH is

    This is a note to me from a member. I've put it here as I think it speaks to the challenges many of us face.

    Dear Wayne,

    This is my first attempt to communicate with you directly.  I will understand if you are unable to reply as I know you are very busy what with all you are involved with on behalf of all NASH patients.  Thank you! Thank You! Thank You!  I first came across Fatty Liver Foundation on January 6, 2020.  I read your post and saved it, and read it again just now.  Saying I was both shocked, stunned, and elated all at the same time does not begin to express all of my thoughts and feelings I experienced then, and in the subsequent months that have past by.  I have continued to read and save your posts.

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  • The Fatty Liver Foundation and Fibronsotics form a patient education partnership

    FLF Launches a Patient Education Partnership to Expand Patient Outreach and Accelerate Early Identification of People with Undiagnosed Nonalcoholic Steatohepatitis  

    BOISE, ID; Dec 07, 2020 The Fatty Liver Foundation (FLF) announced today it is launching a new patient education partnership, in collaboration with Fibronostics, to meet the urgent need for early screening, identification, and intervention for people at-risk of developing nonalcoholic steatohepatitis. FLF and Fibronostics will work toward a shared mission of facilitating access to non-invasive tests that can help identify those at-risk of developing NASH as early as possible.

    Non-alcoholic fatty liver disease (NAFLD) is an umbrella term that describes a spectrum of conditions ranging from non-alcoholic fatty liver to the more aggressive nonalcoholic steatohepatitis (NASH). NASH is a serious condition and can cause scarring of the liver, which leads to cirrhosis, as well as metabolic complications making it a unique medical condition requiring complex care. Comorbidities, such as metabolic syndrome, obesity and NASH, increase the risk factor and severity for patients with the COVID-19 virus.

    Since NASH is asymptomatic until advanced disease, many patients are only identified at advanced stages. One of FLF’s core priorities is to educate people at-risk for NASH and facilitate access to early screening, diagnosis, and care that can save lives.

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  • published Intercept Pharmaceuticals in Sponsors 2020-12-06 15:10:43 -0700

    Intercept Pharmaceuticals

    Intercept-Logo.jpg

    Intercept and the associated logos are trademarks of Intercept Pharmaceuticals, Inc.

    We’re excited to be joining with Intercept for the TRUTH About NASH roundtable discussion in Washington, DC. We’ve assembled a dynamic group of people who all touch this disease in diverse ways, and look forward to a robust conversation encompassing varying viewpoints. As NASH progresses to becoming the leading indication for liver transplants in the U.S., we believe cross-stakeholder discussions like this are imperative – not only to help identify barriers to care and gaps in knowledge, but also to begin to pave the road to potential solutions for this community. 

    We will be reviewing the findings from a new survey that takes a 360º look at NASH from the perspectives of healthcare professionals, diagnosed patients, and the American public. We believe the survey will provide great stimuli for a discussion of some of the challenges facing people living with NASH.

    This effort is part of our program to expand the discussion of liver disease and seek better solutions for patients and those who are asymptomatic but at risk.


  • published noninvasive tests 2020-12-01 19:27:58 -0700

    noninvasive tools you can use

    Online tools can help you understand the risks of liver disease.

    Only a doctor can diagnose a liver disease and it is complex, but if you, as a patient, are better informed your ability to understand the diagnosis and to ask the right questions will enable you to have a better dialog with your doctor. We off these screeners as a tool you can use to better prepare yourself to engage with your physician in diagnosis any potential illness.

    This is a link to a comparison of several Non-invasive tools if you would like a side by side display.

    The next level of screening test looks at specific lifestyle habits and general characteristics to provide a somewhat more refined probability of what your liver health is.  Like the first screening this compares you to the general society so it is not a diagnostic test but can give you a sense of how high you risk might be and help you discuss your specific situation with your doctor.

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    Blood tests and screening calculators can't diagnose liver disease for you, but they can be useful to help you understand what your probability of having liver disease might be and may prompt you to consult your doctor even though you may still feel well.

    More sophisticated online calculators are available which use readily available blood tests and physical characteristics. Nothing personal about you is recorded or becomes part of any record so this is just information for you as a patient to be better informed. Research has shown that the NFS and FIB-4 are useful to help rule out advanced disease.  They can provide some guidance to help you think about it and suggest next steps. They don't prove anything about your diagnosis of possible disease, but they can be a guide to the next steps needed to arrive at a diagnosis.

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    fib4.JPG

    From the tables below you can see how they are applied.  They describe high and low cutoffs which have been shown to provide useful guidance about liver status. They are not not ideal but are a guide to suggest broadly how to view liver health and can help point the way to next steps. These are not yet commonly used by your primary care doctor but there is a movement underway to make these tests part of determining whether a patient should be quickly referred to a specialist even if there are no symptoms of liver disease.

     

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    If you find that you have a high probability of disease it would be wise to see your doctor.  If indeterminate, you need more information.   If your probability is low it is reasonable to be watchful but doesn't suggest that you need to see your doctor soon unless you have symptoms. Any information like this must be weighed in light of all of your other health data as no single snapshot can give you a definitive answer. We offer these to help you understand the general picture as you seek to learn your individual status. Remember advancing liver disease often has no symptoms.

    Recent research has shown that these common blood tests combined with Fibroscan screening improves the accuracy of NASH staging. This is important information which comes from the STELLAR trials. Here is a quote and a link to the analysis.

    Fibrosis-4 index followed by measurement of liver stiffness with vibration-controlled transient elastography or Enhanced Liver Fibrosis test maintained acceptable noninvasive performance in identifying advanced fibrosis due to nonalcoholic steatohepatitis while reducing the rate of indeterminate results, according to an analysis of the STELLAR trial outcomes.

    Other, more sophisticated blood tests are being developed and we will add them here as they become available.

     


  • COVID vaccine distribution plan ignores NASH patients

    The CDC COVID-19 vaccine distribution plan likely ignores NASH patients

    The CDC is working on a plan for distribution of the COVID-19[1] vaccines once they are approved.  While I am sympathetic to how difficult the challenge is, I’m frustrated that their analysis mostly ignores liver disease patients with NASH. The ACIP COVID-19 Vaccines Work Group slide deck provides a look at how the government is planning the distribution of these critical vaccines.

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    The strategy which affects the patient community in particular is called 1C.  This group would get vaccines after healthcare workers, long term care residents, and essential workers.  The proposed 1C group would be defined as over 65 or someone with a high-risk medical condition. Since that designation covers well over 100 million people one might think of it as “the rest of the population”. When you consider that the healthcare and essential workers groups are estimated to be 21 and 87 million the proposed “high-risk” groups are fairly far down the priority list.

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  • CDC knowledge of liver disease incidence with COVID is inadequate

     
     

    Early stage liver disease has been mostly ignored by the medical community leading to diagnosis too late to be helpful even in normal times.  In the age of COVID it can be deadly. When you look at what conditions the CDC lists as increasing your risk of serious illness you see the list below.

    (NOTE, no liver disease mentioned)

    (Might the fact that no one bothers to track most liver disease effectively have anything to do with that?)

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Engineer and cirrhosis patient, founder of the Fatty Liver Foundation

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