In the land of the blind, the one eyed man is crazy ... he sees things that others do not and dreams of things that are thought impossible by the blind.
We have reached our initial goal of screening 1,000 asymptomatic people who have no diagnosis of having liver disease. We will be reporting the results in due time but this is a milestone rarely reached by non profits to be the sponsor and to execute a formal study.Read more
Your sweet tooth and poor dental care could increase your chances of developing serious liver conditions. People of all ages with poor oral health, bleeding gums or loose teeth, have a 75% increased risk of developing non-alcoholic fatty liver (NAFLD) and liver cancer. Meanwhile, a study by a researcher at the University of California has linked regular consumption of added sugar to a number of serious conditions, including NAFLD.
Fructose Increases Risk of NAFLDRead more
Non-alcoholic steatohepatitis (NASH) or non-alcoholic fatty liver disease (NAFLD) affects nearly 10% of children in the US, aged from 2 to 19 years old. The condition has become more common in children over recent decades, partly due to an increase in childhood obesity. Parents and families have an important role in not just spotting signs of fatty liver disease in their children, but in addressing lifestyle and dietary changes in their family to help reduce their child’s risk of developing the condition.
Fatty Liver Disease In ChildrenRead more
An article by Jackie
There are no medical treatments for non-alcoholic related fatty liver disease, according to the American Liver Foundation – indicating the extent to which a healthy diet and exercise are key to preventing or reversing early-stage fatty liver disease. Far from having to excessively count calories or otherwise follow an intensely strict dietary regimen, people with fatty liver disease can progress significantly by embracing a nutritious, delicious Mediterranean diet. Known as ‘the heart-healthy diet’, it is also rich in healthy Omega-3 essential fatty acids and low in refined sugars, and can be a nutritious tool against fatty liver disease.
Why The Mediterranean Diet?
Getting Ready For A Hospital Stay
As many as 30 million American adults have non-alcoholic steatohepatitis (NASH), a fatty liver disease characterized by inflammation and scarred tissue. More commonly referred to as non-alcoholic fatty liver disease, a patient will often have no symptoms and may have only come to medical attention when tests have been carried out for something else. This may happen if an ultrasound shows that your liver looks unusual or if you have an abnormal liver enzyme test. You will likely be required to have a series of tests to determine the diagnosis and severity of the disease. Most of these tests and later any required treatment will likely require a stay in hospital.
Preparing For Hospital Stay
We don't normally write about alcohol abuse, but for people with an injured liver from other causes alcohol is particularly dangerous. Since many people have cirrhosis without symptoms they likely won't appreciate the increased risks they have due to alcohol use. This is becoming a bigger problem for our older population and the link below is to an excellent article from the National Council for Aging Care that is useful even if you are young.
Alcohol is a major part of the culture of the United States. In 2014, alcohol sales—which include beer, wine, liquor, and other alcoholic beverages—totaled nearly $225 billion. The following year, more than 15 million Americans over the age of 18 reported having Alcohol Use Disorder (AUD), known more commonly as alcoholism. That number is even higher among people who haven’t reported the disease or have yet to see a doctor for a diagnosis.
A number of people in that group are seniors. About 10 to 15 percent of people don’t start to drink heavily until they are older in age, according to UCLA professor Dr. Alison Moore. Because of this, alcohol-related emergency room discharges among the elderly reached nearly a three-quarters of a million in 2012. This number—as well as the number of alcoholics who are also seniors—is expected to rise as the senior population grows to 80 million by the year 2050.
What if you had a liver disease but nobody told you until it was too late?
Typically, nonalcoholic fatty liver disease (NAFLD) and nonalcoholic steatohepatitis (NASH) are silent diseases. They have no symptoms. Even if cirrhosis has developed, there are often no symptoms until the liver has become so damaged that the only option is a liver transplant.
Early screening for NASH is essential, but obstacles abound. While there is a quick, easy and economical method to screen for fatty liver disease, it is not widely available and screening in the absence of symptoms is often not part of standard medical practice policy. Medical coverage for the test also may not be available if the patient isn’t sick or doesn’t have symptoms.
This article was recently published in Real World Health Care. Here is a link if you are interested in reading it.
Sorry to those who have been here and are already serious about your health but we have a lot of new people who are trying to understand how to be kinder to their livers and who need to understand things that matter.
Lipid metabolism, big words that mean how does your body use fat. We see endless articles about fat in our diets. Endless contradictory claims about special diets, miracle foods, buy my secret pills, doctor invented. blah blah. Very confusing if you aren't a bio-chemist.
The subject is vastly complex. In this note I'll try to simplify just one subject that you can have some control over.
There are many paths to the inflammation that is NASH/cirrhosis and a potential killer. Your food is really a complex soup of chemicals that the body uses to your benefit or tries to defend itself against. With inflammation or NASH the balance between things that make it worse and those that make it better, in simple terms, determine the outcome of fibrosis and cirrhosis resulting from NASH.Read more
Since you are on my mailing list you know about NASH, unlike most of the people. We had the 2019 version of NASHday on the 12th and as I think about how that event went I am struck by the fact that as a health outreach it was unusual.
I'll explain why but first, the punchline, NASHday was about people's lives and not about money.
We have every kind of "DAY" that you can think of. Every cause has a day or a month, some peg to hang the cause on and to focus attention. Just as an example, these are the top five unofficial holidays according to toptenz.net.
1. Black Day.
2. Autistic Pride Day.
3. International Free Hugs Day.
4. Monkey Day.
5. Record Store Day.
A blog post by Jackie
The United States healthcare system spends an estimate of $32 billion annually on the treatment of Non-alcoholic fatty liver disease (NAFLD). Despite these huge figures, not every person suffering from NAFLD is able to receive treatment due to the high medical cost as the state covers just a fraction of it. Although people take health coverage to pay for medical costs, a survey conducted in 2017 showed that 11.3% of adult Americans had no medical coverage and those that have, it is limited to a certain amount leading to patients of NAFLD to seek alternatives to cover the deficit. Sadly, this disease is silent with over 100,000,000 Americans living with fatty liver and are not aware of it.
Cost of Treatment for NAFLD
The annual cost of care for a NAFLD patient that has a private insurance poloicy is $7,804 and for new diagnosis is $3,789 - without treatment. Treatment cost for non-alcoholic fatty liver disease is very high according to a study presented at the International Liver Congress 2019 in Vienna. The annual cost of treating NAFLD has been approximated to range between $20,000 to $100,000 annually based on a study by a group of Israeli researchers. To meet these expenses, many have to rely on loans; however, it’s important to bear in mind that consumer debt is not the same as medical debt, as medical debt is not incurred voluntarily and does not involve credit extension.Read more
We support health writers who wish to spread their work to a wider audience. This article was submitted by Natalie Shae.
Note, the study cited in the article was very small with children under physician care but if you are a liver patient it is a cautionary note if you are considering CBD oil. We are not aware of any research that would suggest using it more broadly but consult your doctor.
Liver Damage and CBD Oil
June 4, 2019 by Natalie Shae
The FDA has approved a CBD-based drug named Epidiolex®. The drug was researched and made by Greenwich Biosciences, and the company’s vice-president of U.S. professional relations, Alice Mead, has stated to the FDA that CBD is “potentially” a liver toxin. She said this during the FDA’s first public hearing on CBD oil on May 31, 2019.
What is CBD oil?
Cannabidiol oil is extracted from the hemp plant, which is in the same family as marijuana. Unlike THC in marijuana, CBD does not cause a “high” or chemical dependence. CBD that is extracted from the hemp plant is legal, but individual states have laws to regulate it.
Because CBD oil is not considered a drug, it can be a common additive in many products. This includes e-cigarettes (vape oil), lotions and various herbal supplements. It has also been shown to relieve symptoms of different disorders like epilepsy, anxiety and multiple sclerosis.
About one million Americans have cirrhosis and don't know it. When they are told "You have cirrhosis, I'm sorry but we have no treatment", the future that they imagined lay before them dies. It is, in a very real way, a death of self.
We all know that we will one day die but we hold a sense of how we think or hope our future will unfold. There is a continuity that flows with the preceding events in our lives as a single journey. If you have no warning, as so many liver disease patients do not, and your first information is that you have cirrhosis, a probably terminal illness, the self that you have known dies. The life you thought you were living no longer exists and a new unbidden and unwanted future is before you and you must find a way to reconcile yourself with that new reality.Read more
with all due apologies to Elizabeth Barrett Browning.
I love thee to the depth and breadth and height my soul can reach.
As a patient, the scale of the effort directed at liver disease that has been put on display at AASLD, EASL and the NASH Summit recently was striking. Not being a veteran goer to this kind of event it was all a bit overwhelming. As an individual the scope of the activity is very difficult to wrap ones arms around. Interestingly, there is a great sense of gratitude attached to the experience of observing all of the effort that is being directed toward solutions that might one day mean life or death for me as an individual. The scale of the events is too big for me to digest in a meaningful way but are a powerful testament to the contributions of the health community to the best of us as a society.
I love thee to the level of every day’s most quiet need.
The day to day burden of living with chronic disease, of which cirrhosis is but one, cannot be appreciated by those who are not unwell. Even those in the profession see mostly the surface and would go quickly mad if they were to allow themselves to be sucked into the suffering of those they care for in any deeply personal way.Read more
I just returned from the EASL meeting in Vienna. It is one of the two most important gatherings of liver researchers and industry conferences focused on liver disease. For many years this was a modest affair. There have always been plenty of ways for the liver to be harmed but there was not much that could be done so, like the liver, the event cooked along in the background. When the cures for Hep C and HIV were developed everything changed. When it became clear that liver disease could be cured and that something could be done about the very large disease load peculating through our generations the spotlight turned squarely toward liver function.
Our epidemiological studies have, for years, been showing the burden of disease building in society with our steadily advancing obesity and comorbid problems. Most of the attention has been focused on diabetes, cancer, and heart disease because we had ways to at least try to deal with these health threats. The liver, which is a comorbid participant in a wide variety of diseases, was largely ignored because there was nothing medicine could do about the typical liver diseases of NAFLD and NASH. Even though a stage 4 NASH is 7 times more likely to kill you than diabetes, it remained mostly out of sight because of its lack of symptoms.
However, today the times they are achangin!Read more
When combined with their common comorbidities, NAFLD and NASH are the Swiss army knife of death. Like the Swiss army knife, which has many functions, liver disease is a favored tool of the grim reaper because of the complex role it plays in the health of other organs.
As patients, we think about disease by organ system, largely because that is the way medicine investigates disease. We know about diabetes, cancer, heart attacks, dementia, irritable bowel, just to name a few that we have a sense of. We know cirrhosis because of alcohol and we may have heard about fatty liver but we have very little understanding of the vast interactions that are the responsibility of the liver.Read more
I have been helping several groups doing research on what is happening with liver disease patients and I have been surprised by a trend that I have noticed. When a person first learns that they have a serious liver disease they reach out to Dr Google, our forum, and significantly to FaceBook support groups. I don't have numerical data, but I interact with multiple forums that reach thousands of patients so I have a window into what the day to day is like.
A problem we have focused on is that it has been the standard of care not to screen for liver disease at the primary care level, in the absence of symptoms. That means that the first time many people learn of their risk is being told that they have cirrhosis. Much of our effort has been spent trying to illuminate this as an issue. We are particularly concerned as the disease is showing up in younger people in the death rate statistics but we hadn't really seen movement in when people learn about the disease.Read more
We hear a lot about the patient voice. There is a focus on the patient experience but it often engages the symptoms and the physical struggle but rarely touches the psychological.
A young friend, Jeanie (not her real name), lost her battle but along the way helped me understand the process better. Her story is common but unique as well. I hope to pass along a small window into that aspect of being ill.
Illness is a common thing. A part of life which we all learn about from a young age. Our sense of it is that it hurts but we expect we will be better and return to our normal lives. Being diagnosed with a chronic illness is a very different experience. Grief is another process we learn young. People die and we grieve for them. The onset of a chronic illness is the death of ourselves and we grieve that passing. The person we once knew so well is gone. The future that we imagined before us has become a journey through a very different world. Grief for the death of a loved one is expected. Grief for the death of oneself is rarely acknowledged.Read more
An overview of the state of the art by Fibronostics
5 Ways Digital Diagnostic Tools Are Changing Medicine
Imagine a tool that has the capability of accurately detecting disease and monitoring a patient’s health without the need for invasive, costly methods like X-rays and biopsies? Sounds impossible but this has become a reality in recent years.
As technology continues to evolve, it is no surprise that topics like digital diagnostics have become popular in the healthcare industry.
What Are Digital Diagnostic Tools?
Digital diagnostic tools are becoming more and more popular among healthcare providers. Through this technology health evaluations can be done virtually and electronically, allowing even patients who are not physically in their healthcare provider’s office to be diagnosed or evaluated. This innovative technology is predicted to improve medical care for both patients and doctors.Read more
This is a major step for us as patients. We all know the story. The doc says sadly, "You have cirrhosis, I'm sorry we have no treatment". This is a refrain we see retold thousands of times here at the Foundation and it is the path I have personally traveled. I've written that we are on the brink of a new day when we will have options. This is the dawning of that day.Read more