Improving together the medical learning about NASH to better address its causes and consequences and serve patients.
The NASH Education ProgramTM defines and drives initiatives in collaboration with an independent scientific committee² composed of four international key opinion leaders, well-known and respected in the field, with a footprint in both hepatic and metabolic diseases, and a strong presence in the United States as well as in Europe.
The objective of this public health initiative is to place the practitioner and the patient at the heart of tomorrow's awareness and education actions. It aims at producing essential and relevant scientific and medical knowledge, and at disseminating it towards targeted audiences:
- > All physician specialties, going beyond hepato-gastroenterology, i.e. including diabetologists, endocrinologists, obesity specialists, cardiologists, OB-GYN and general practitioners who will all have a key role to play in the clinical management of NASH patients;
- > Patients and their families, but also individuals at risk, who all need to understand causes, mechanisms and consequences of the disease, to fully appreciate the importance of an early diagnosis and a treatment well-suited to their condition.
Clinical trials are important. We support them because they are the only way to get treatments that work. I recently took 5 members of my family to Dr. Rohit Loomba's, a world renown liver specialist, lab at the University of California San Diego where we participated in a study seeking a genetic basis for familial liver disease. The goal is the find out what role DNA plays in the development of liver disease. If you are interested in learning more, click on the link below. If your family seems to have liver disease you might check it out.
One of the side benefits of participating in trials is that you get great testing and care. In fact, people who are part of a trial do better than the average patient even if they get the placebo because they are monitored closely, but that is a discussion for another time. For now a key fact to understand is how dangerous liver fibrosis/cirrhosis is. We measure that as the hazard ratio or how likely you are to die compared to a "healthy" person. In this chart you can see that with stage 4 you would be 10 times as likely to die as someone who is healthy.
As part of this research study I had the opportunity to get new tests of my liver health. My personal study experience began January of 2015 when I was diagnosed with cirrhosis following NASH. At that time I had a fibroscan test which gave me a fibrosis score of 21.5. That isn't meaningful for most but typically any reading over 12 is considered cirrhosis. It was a bit like one of those movie dramas where the doc says sorry you have a terminal illness and there is nothing we can do. A 3 Kleenex moment for sure.
Cirrhosis has no medical treatment and progresses to end stage liver failure and/or liver cancer which results in a long unhappy journey to meet the MAN if you can't get a transplant.
There is, however, one non-medical treatment which is to stop eating things that kill your liver. Since I wasn't inclined to meet the MAN just then, I decided to try that. It was interesting to learn that there are hundreds of different "experts" telling you what to do to fix your liver. Fortunately there is research that points to a reasonable way to go so I became part of a longitudinal, that means spanning years, study to see what effect a research defined healthy lifestyle and dietary change could do for my liver. If the details interest you here is a link to a discussion of diet.
OK, long way around, but at the UCSD study I got updates on my liver status. Remember this is 3 years since my diagnosis with cirrhosis. Today my fibroscan score is 9.6. What does that mean you might ask? Remember that first test of 21.5 was well into the cirrhosis category. A 9.6 is a stage 3 disease which means that my liver has improved significantly. This chart shows what has happened to the staging of my disease over time. If you remember the hazard ratios above, it suggests that I am about 1/3 as likely to die this year as when I started this.
What does that mean to you? For starters, it is absolutely not true that there is no treatment for fibrosis. There isn't a pill you can take for it - yet. But if you eat right, exercise, and lose weight, your body will try to heal. One of the key dietary messages is to make oleic acid, the omega 9 oil found in extra virgin olive oil, the main source of fat in your diet. Here is a discussion of olive oil that you may find of some value.
It is a lot of information, but if you really are going to change your lifestyle, you can only do it successfully if you have clear goals and understand why what you are doing is important. We hope this information is of value to you or is something you might share with others who might find it useful.
On a broader front, the foundation is working toward our goal of creating screening centers to provide early detection of liver fibrosis, before you have any symptoms, and to help you not have to face end stage liver failure. Here is a link to some information about that program.
We hope you are well.
The financial burden of many medicines today is overwhelming even for those with insurance coverage. We are working with The Healthwell Foundation to try to spread the message that financial help to pay for needed treatment may be available for some conditions. At this time there are no drug therapies for cirrhosis so all we can do for now is direct you to help if you have hep C.
I recently attended the meeting of the AASLD, the American Association for the Study of Liver Disease, which is a group of world leaders in research into liver disease. I was very encouraged by what I heard there and I've been wondering how to explain that to the community dealing with disease.
Fatty liver has mostly been dismissed as a medical problem because it was often benign and even if it wasn't there was no treatment anyway so dealing with it was a matter of waiting until some organ showed symptoms and try to deal with those until you die. Many doctors today leave their patients with that feeling of hopelessness with the phrase, I'm sorry but we have no treatment.
There are two very important points that I want to make. First, it isn't correct to say there is no treatment. Diet and lifestyle have been well proven to be treatments and there is a lot of information on our website about diets. If you want to review, here is a link
More importantly, we live in a very fortunate time because medical knowledge is advancing at a torrid pace. I've struggled to put that into perspective and decided to relate a discussion I had with Dr Peter Traber, the CEO of Galectin Therapeutics, one of the companies researching liver disease treatment.
Dr Traber is also the author of the blog, LiverLine, which I suggest you read. It is excellent. He was relating the changes in health care over his career. His example was Hepatitis C. When he began his career the virus was unknown. Over the course of several decades it was discovered and even though it was very difficult a cure was developed and now we can defeat that disease. His observation of the state of liver disease research is that we are now on the brink of developing real treatments for liver disease. Even a veteran researchers like him is impressed by the speed and quality of the work being done on liver disease today.
There are over 400 drugs being actively evaluated and only a few will turn out to be of value but the research community is confident that they now know enough to be sure that we will get useful therapies in the next several years. The message for current patients is that for now diet and exercise are your only friends but help is on the way so a hopeful attitude is also part of the therapy.
The foundation was spawned out of my personal journey through undiagnosis, misdiagnosis, and finally a stage 4 NASH so I've chronicled my journey through our website. I just completed a checkup at the transplant center and now that we are two years into my treatment plan I am starting to get enough data that might be helpful.
I do have some very encouraging results to report. In 2015 I had an MRI elastography which reported my liver stiffness as 4.8 kPa. Their scale shows that to be a stage 3 moving into full cirrhosis which they start at 5.0 kPA. My biopsy called it cirrhosis and I also had a fibroscan that year which read as 21.5. Anything above 12 is considered to be cirrhosis. A long way around to say I really do have a liver in trouble even though I have never had a symptom of any kind. Go figure.
There are many ways to support the efforts of this foundation. General purpose donations are welcome from anyone concerned about public health in general or liver disease specifically. At the program level we invite sponsorship in the following ways.
The Diamond level sponsor supports the operation of our screening and clinical trial registration project with a minimum of $100,000. Up to 5 diamond sponsors may cooperate to fund a van and they will be featured prominently with logos on the van and information in all of our media efforts promoting their support for public health.
The Gold level sponsorship is anyone who contributes at least $50,000 to the foundation in general support but these sponsors do have the opportunity to direct their contributions to be dedicated to particular projects in partnership with the foundation. The van based screening project is our most visible patient outreach program but there are many needs within the obesity, fatty liver, and cirrhosis challenged patients that benefit from efforts surrounding the van events.
The silver level sponsor has provided a contribution of at least $25,000 which will be used for general and administrative expenses. Silver level sponsors will be honored on the company website with a display of their logo and links to their webpages for more information.
Bronze level contributors have provided contributions of at least $10,000 which will be used for general and administrative purposes and they will be honored on a page of our website recognizing their contributions.
Blue ribbon contributors have supported our efforts with at least $5,000 and these funds will go mostly toward internal non program expenses as they will be consolidated with smaller donations but they will be recognized on our blue ribbon page.
Green level contributions are all those less than $5,000. These represent the real public support of the foundation. Like the fertilizer that helps plants grow, the organic contributions of the public at large are the most valuable as they represent the patient and caregiver groups to which we dedicate our efforts.
Whatever level of support you can give will be greatly appreciated and will be used to maximize its benefit to the current and future patients of liver disease and the complications of obesity which is at the heart of most fatty liver disease.
If you are here, you or someone you care about is ill, or is obese and at risk for liver disease.
This is what you will find here:
- Non-technical explanation of how your body actually works
- How the liver develops disease over time
- Why fats are a critical source of fuel for your cells
- How the liver manages triglycerides
- How the course of fatty liver disease depends on triglycerides and carbohydrates
- How the kind of dietary fat you use matters
- Information by a liver patient for liver patients
- Information about diet based upon bio-chemistry not fads
We are a nonprofit foundation and we do not represent anyone but the patient. If you are looking for advice on supplements or quick fixes this is not the place for you. We offer extensive information about the body in general, the liver specifically, and we recommend lifestyle strategies that have worked for me specifically and which I believe are valuable for anyone concerned about liver health to be familiar with.
This site offers you extensive opportunity to add your own comments and experiences to the pages. We invite you to add your own thoughts if you would like to. Patient and caregivers stories are especially helpful to other sufferers.
On the morning of December 23, 2010, after having my gall bladder removed, I was shown a picture of my liver and told I had a stage 4 liver cirrhosis. It was a powerful and frightening moment – one that is seared into my memory. And one that began more than a half-decade of tests, misdiagnoses, and, eventually, lifestyle changes.
I was astonished that morning to learn that my case was pretty typical. Cirrhosis, the final stage of liver disease leading to liver failure, is commonly reached without any warning symptoms. I remember very clearly my doctor’s words: “I’m sorry, but we have nothing to offer. There is no treatment.” My vision of my liver was that of a deadly beast that would kill me. Being told that losing weight and exercising could help didn’t inspire.Read more