Fatty Liver Foundation organizer

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


  • 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.
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    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

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    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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    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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  • Terri's Journey -- Battling liver cancer caused by NASH

    I haven’t posted a personal update in a while and so here you go.

    First, before I begin, I’m doing really well right now. I still get tired easily. I still have minimal energy to exert. I still take naps during the day. But I’m doing good.
    As a reminder…in August I had a procedure done to remove a cancerous tumor from my liver. The cancer is called HCC, or Hepatocellular Carcinoma. It is a cancer that originates in the liver. This is the third tumor I’ve been diagnosed with.

    The procedure I had was a Microwave Ablation. I did have to go under general anesthesia. The Interventional Radiology Doctor who did the procedure used one probe that he inserted through my abdomen into my liver. He moved it 3 times around the tumor to get clean perimeters. The total amount of current through the probe was 16 minutes. And yes, it is a microwave current. Just like you heat up your food. Gross, huh.

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  • Non-invasive testing info at AASLD

    The medical society that guides the treatment of patients is the American Association for the Study of Liver Disease (AASLD) their annual meeting is this week and it is virtual with a lot of first time patient access.  This is the first time patients have been welcomed so if the state of the art of liver research interests you, here is a link. Join Us!

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    https://tlmdx.aasld.org/

    I am particularly excited by an event that has generally gone unrecognized but it is tremendously important to the patient community. They just don't know it yet.

    Madrigal Pharmaceuticals is a small drug developer. They have been quietly doing their work while the pharmaceutical giants get most of the attention.  They have been allowed by the FDA to conduct a phase 3 trial of their drug Resmetirom, called Maestro-NAFLD, without requiring a biopsy.

     

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  • published NASH - Swiss Army Knife of Death in Voices - our blog 2020-10-29 10:31:26 -0600

    NASH - Swiss Army Knife of Death

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    1 A PATIENT'S VIEW OF THE NASH JOURNEY

    When asked to write an article about the patient perspective, it was easy to say yes. Now, looking at this page it is a daunting task. As a cirrhosis patient and Chief Executive Officer (CEO) of the Fatty Liver Foundation, a patient advocacy group, I have my own personal story. My journey from thinking, I was perfectly healthy to facing a terminal illness is common enough but it does not represent what one might describe as the “patient journey.” Through the foundation, we interact with thousands of patients so I hope to provide here a broader glimpse into life as lived by patients.

    When we consider patients as a general case in the USA, we see a population that is unwittingly choosing to be ill more often as they age and to die younger and with more difficulty than they expect. Nonalcoholic steatohepatitis (NASH), a disease that was undefined until 1980, has become a leading killer of middle age and older adults. A leading precursor, nonalcoholic fatty liver disease (NAFLD), is steadily increasing in all age groups.

    TO READ THE PUBLISHED ARTICLE CLICK HERE


  • published Gabriella Wan joins FLF in Press 2020-10-12 15:41:00 -0600

    Gabriella Wan joins the Fatty Liver Foundation

    BOISE, IDAHO (October 13, 2020) — Fatty Liver Foundation today announced the appointment of Gabriella A. Wan as Executive Assistant and Program Coordinator effective October 9, 2020. Gabriella will provide administrative support of the CEO’s office and program coordination of the executive leadership team.

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    Gabriella joins the Fatty Liver Foundation from Georgetown University Department of Global Health where she served as Research Assistant with a focus on health economics and financing. She previously served as Administrative Assistant at Georgetown University Graduate School of Arts and Sciences where she provided administrative support to the Deans’ Offices.

    Gabriella received a Bachelor of Science in Global Health and a Master of Science in Global Health from Georgetown University. She also participated in the School for International Training (SIT) Honors Program where she engaged in field-based global health programs in Washington, DC, Vietnam, South Africa, and Argentina.

    “We are thrilled to welcome Gabriella to the team,” said Wayne Eskridge, Co-Founder and CEO of Fatty Liver Foundation. “Her new role is essential for supporting the growth of our operations and programs as well as advancing our mission to identify and educate people who are at-risk for NAFLD/NASH or living with NASH.”

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  • published Effective Diet Advice in Voices - our blog 2020-10-09 15:07:12 -0600

    Where Can We Get Effective Diet Advice?

    THE PROBLEM: The real liver experts don’t offer effective diet advice

    (click here for a pdf with all the science references)

    Currently, the experts who treat liver disease, (the specialists of AASLD), do not officially recommend any specific diet for liver health. The reason is because there are not enough well-designed dietary clinical trials focused specifically on the liver to give the organ experts confidence to make official dietary recommendations. This creates a serious dilemma. As patients we don’t have that luxury. We must make choices. We must live every day making food decisions and hope that our diet is a healthy one even if the experts can’t help us. No wonder we see endless variety in dietary advice and “experts” of all persuasions.
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    OUR GOAL: Design a diet strategy that minimizes the liver workload

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  • published Liver Friendly Diet in DIETS 2020-10-04 09:53:53 -0600

    The Liver Friendly Diet

    THE PROBLEM: The liver experts don’t offer effective diet advice

    (click here for a pdf with all the science references)

    (click here for a one-page guide to the Liver Friendly Diet)

    Currently, the experts who treat liver disease (AASLD), recommend no specific diet for liver health. There are not enough well-designed clinical trials focused specifically on the liver to give the organ experts confidence to make official dietary recommendations. This creates a serious dilemma. As patients we don’t have that luxury. We must make choices. We must live every day making food decisions and hope that our diet is a healthy one even if the experts can’t help us. No wonder we see endless variety in dietary advice and “experts” of all persuasions.

    THE GOAL: Design a diet strategy that minimizes the liver workload

    The Fatty Liver Foundation recommends a diet high in oleic acid (omega 9) unsaturated fat (30%), primarily from extra virgin oil, low in saturated and trans fats (7%), with a omega 3 and 6 fatty acids approximately equal (8% each). Protein is about 20% of calories and carbohydrates are primarily in the form of fruits, non-starchy vegetables, and whole grains (27%). Simple carbs, such as sugars and refined grains, are minimized. The goal for salt intake is about 70% of the USDA recommendation. Processed foods and red and processed meats are avoided. (see this pdf for the research supporting this strategy)

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    Nonalcoholic fatty liver disease (NAFLD) affects approximately one third of adults in the United States and is the most common cause of chronic liver disease worldwide. About 20% of patients develop the more serious steatohepatitis (NASH) which is becoming epidemic as a result of the rising rates of obesity and metabolic disease. Emerging data suggest weight loss of greater than 10% of body weight is beneficial in resolving steatosis and reversing fibrosis due to NASH.

    The liver disease specialists don’t have enough proof that they are willing to endorse a specific diet, so keep that in mind as you listen to the sales pitches. There are thousands of claims about food. Here we are trying to give you the most complete picture that we can, but just remember, if someone is selling you something, they have an agenda and real evidence is hard to get.

    As patients where do we look for dietary guidance?

    We understand the challenge for science to provide specific and verifiable data, but as patients we still have to live each day and we make decisions about our diet by making use of whatever information is available to us. We also must live within the cultural and food availability situations that we find ourselves. 

    It is very difficult to do effective random, blinded, controlled trials (RCTs) of the diets of humans. There are myriad ethical and cultural concerns with human experimentation and the human diet is vastly complex within different cultures and practices. In our role as the voice of the patient, we believe that a position of offering very limited guidance is inadequate so we are providing this information as a patient resource for those who seek to understand the components of diet and available research which we believe offers a coherent view from which to make decisions about diet. The goal of our lifestyle strategy is not to diet but to adopt habits that are fundamentally healthy long term and probably contribute to a healthier liver and a better life.

    Making the best choices we can with the information we have

    A lifestyle that is fundamentally healthy is built on a vast series of small choices made each day over a lifetime. It is a pattern of behavior based upon choices which are, on average, neutral to healthy while minimizing ingesting things that compromise function.  There is no one size fits all solution. Human metabolism is quite robust and is able to accept a wide range of inputs and to use them to sustain bodily functions.

    In our role as a supporter of people concerned about liver health, our goal is to support a lifestyle which minimizes the work that the liver must do to sustain our lives. Conceptually, when any of the parallel processes taking place within a liver cell is either oversupplied with or denied those dietary elements that it needs to maintain a stable response we have failed in that goal.  In making decisions about food, the goal is stability of function, stability of supply, and minimizing toxins. A sick liver benefits from a strategy of making it do as little work as possible.

    Talk to your doctor

    All patients should discuss dietary strategies with their doctor. This information cannot substitute for guidance by your physician. This material provides research-based information that will help you better understand your doctor’s advice but cannot be relied upon for personal health decisions.  Information is critical to help plan and implement a strategy to adopt lifestyle change but there is no single solution to decisions about diet and this information is therefore incomplete and may well be proven to be incorrect as research is performed in the future. This discussion provides information from a health perspective broadly which can inform choices about what constitutes a liver supportive diet.  A broader benefit is that this approach provides a holistic regimen which benefits many co-morbid conditions such as diabetes and cardiovascular health as well.  In many ways, what is good for the liver is beneficial for the body as a whole.

    It is important to remember that your doctor may have little nutrition education.  We rely on them, but many are unprepared to really help us with diet decisions. Current medical education does not provide much focus on the issues of diet. This paper contains references to research which we have relied upon in developing it so you may be able to use it to engage your physician in the science argument about various aspects of diets. The material presented is not exhaustive or necessarily authoritative but is a coherent way to approach the lifestyle challenge.


  • published COVID not the only game in town in Patient Stories 2020-09-19 19:03:38 -0600

    COVID not the only game in town - Kim's story

    As I write this I see the covid numbers are rising again. I hear people in denial, it could never happen to them. Today I have something equally life threatening to write about. It is not about Covid. It’s about ANOTHER little recognized epidemic. I lived it. I will be very happy if this resonates with just one person.

    Here’s my story.

    Christmas Eve 2013, I was feeling pretty proud of myself. I was on my way to a healthier life. Earlier in the year I joined my local YMCA. I exercised 6 days a week. I was eating healthy and watching calories. All in an effort to lose weight. I had been overweight since I was a child. Smaller clothes was just a small part of why after 30 years I was losing weight. Feeling good was a great reason but what gave me real motivation was the fact I wanted to be a living kidney donor for a family member. I had lost 96 pounds in 7 months. Then I woke up with what I thought was the flu. By evening I thought I was doing better. When I got sick and vomited up a huge amount of red blood. I found myself in my local ER where I was literally bleeding to death with no clue why. I was taken to the back where I was still very much awake and scared to death.

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  • COVID infections, What diseases make you the most vulnerable, New data

    Comorbid conditions increase the risk of being infected with COVID.  We hear that all the time but what does it really mean? A study was just released that provides some very important insights. Here is a chart showing the odds ratio, that is a measure of the relative risk compared to a healthy person.  Look closely. This is important. Note that NASH is over 14.

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    Broadly, these are the elements of metabolic syndrome and fatty liver disease.

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Engineer and cirrhosis patient, founder of the Fatty Liver Foundation

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