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Stigma Related to NASH Syndrome

Non-alcoholic steatohepatitis (NASH) is a type of fatty liver disease. It is the advanced form of non-alcoholic fatty liver disease, commonly known as NAFLD. NAFLD causes the liver to start storing excessive fat, which eventually causes inflammation and liver damage. At this stage, the disease is known as NASH, which can lead to liver scarring. Scarring of the liver can be a fatal condition known as cirrhosis if left untreated. NASH usually does not cause any visible symptoms, but there is a lot of stigma associated with such types of hepatic disease, primarily because it causes a person to become obese. Read on to find out everything about NASH syndrome and the stigma associated with this condition.

What is NASH Syndrome and What Are Its Symptoms?

NASH is one of the two types of non-alcohol-related fatty liver disease (NAFLD). NASH develops in a person when the body begins to store excess fat in the liver cells, which makes it difficult for the liver to function normally. (1,2) This causes swelling, damage, and even scarring, which can become a serious problem with time. Scarring of the liver can lead to a potentially life-threatening condition known as cirrhosis. (3,4,5)

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The acronym NASH stands for non-alcoholic steatohepatitis. A doctor will diagnose you with steatosis or fatty liver if over five percent of your liver’s weight is made up of fat. (6) If a person is diagnosed with NASH, it means that their liver contains a high percentage of fat, but also that the liver is swollen and has already sustained some damage, which can cause scarring or fibrosis.

According to the National Institutes of Health (NIH), it is estimated that between 1.5 to 6.5 percent of adults in the United States have NASH. (7) On the other hand, NAFLD is the most common type of chronic liver disease in most industrialized nations, including the US. (8) It is believed that out of the 25 percent of adults in the US who may have NAFLD, out of this, 80 percent have simple fatty liver disease, while others have NASH.

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Most people with NASH or any other type of NAFLD do not tend to experience any symptoms. Those who do feel any symptoms are most likely to only feel tired or experience some pain in the upper right-hand side of the abdomen.

Meanwhile, children with NASH may experience the following symptoms: (9,10)

  • Pain in the upper right or middle of the abdomen
  • Fatigue
  • Patches of discolored or darker skin may appear on the neck or under the arms.

However, if NASH causes cirrhosis of the liver, you may experience the following symptoms as the condition gets worse:

  • Bruising easily
  • Bleeding easily
  • Itchy skin
  • Loss of appetite
  • Nausea
  • Yellow discoloration in the eyes and skin (jaundice)
  • Fluid buildup in the abdomen
  • Swelling in the legs
  • Drowsiness
  • Confusion
  • Spider-like blood vessels on the skin
  • Slurred speech
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A doctor may be able to only diagnose NASH after several years when the stage of cirrhosis occurs. If a person with NASH develops cirrhosis, it increases the risk of developing a type of liver cancer known as hepatocellular carcinoma.

The exact cause of NASH remains unclear, though there is a lot of research being done that suggests that the following factors may be responsible for causing this condition:

  • Oxidative stress, which creates an imbalance between the production of free radicals and antioxidants in the body.
  • A person’s genetic makeup. (11,12)
  • Intestinal bacteria, which might be responsible for the inflammation of the liver.
  • Apoptosis, or programmed cell death, or liver cells.
  • Overproduction and release of cytokines, which are a type of toxic inflammatory protein produced by the body. (13,14)

Stigma Related to NASH Syndrome

To begin with, liver disease is a complex condition and an equally complicated term because it can have a wide variety of meanings. There are over 100 different types of liver disease, each caused by an equally huge number of factors, including toxins, viruses, genetics, alcohol, and many times even unknown causes.

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Since there are so many different types of liver diseases, there is usually a lot of misinformation and confusion associated with these. This misinformation sometimes causes people to make incorrect assumptions and leads to fear and judgment – all elements that create a certain stigma about diseases like NASH and other liver diseases.

Stigma can be defined as the act of shaming or putting someone down and treating them differently because of factors like their health condition. Stigma is a type of negative stereotyping, and it hurts the person at the receiving end.

It is true that several liver diseases are linked to things like alcohol use, drug use, or being overweight. Unfortunately, many people have strong negative views and stereotypes associated with such causes. And therefore, many people with liver disease feel the negative impact of such stereotypes, regardless of whether they drink alcohol, use drugs, or are overweight.

The most common stigma related to NASH syndrome is caused by the presence of the term alcohol in the name of the disease. Even though the term says non-alcohol, people often just hear the word alcohol and assume that the person has a liver disease caused by excessive drinking. It is estimated that seven out of ten people suffering from non-alcoholic fatty liver disease experience some level of stigmatization in their day-to-day lives. (15)

Studies have shown that patients having hepatitis B and C are usually stigmatized at their workplaces and in their social relationships regardless of how they got the virus. At the same time, patients with liver cirrhosis are also stigmatized against, irrespective of how they developed the disease. While there is little data to show how much stigma people with non-alcoholic fatty liver disease face, it is still very likely that these patients also have to face a certain level of stigmatization owing to the word ‘alcoholic’ and also because many patients with NASH or NAFLD also have obesity. (16)

NAFLD is often associated with obesity as well as metabolic syndrome, and a large percentage of patients who have this progressive disease will go on to develop the disease from a simple steatosis to cirrhosis and/or hepatocellular carcinoma. Obesity and liver are two conditions that are known to be common drivers of stigma. And since NASH or NAFLD is usually also associated with an impaired quality of life, the stigma tends to automatically affect the overall quality of life of these patients even further.

Over the years, studies have found that nearly 69 percent of patients with NAFLD feel stigmatized, and the feeling of stigma is even higher in those patients whose disease has progressed to cirrhosis (72 percent) as compared to those who do not have cirrhosis (67 percent). (15) Stigmatization had a very negative impact on the mental health of these patients while also reducing the possibility for these patients to access proper recovery and care options.

It is essential to stop this stigmatization of liver diseases. Stigma makes it challenging for many people to disclose their diagnosis, even to their close friends and family. The stigma becomes the most significant barrier to accessing treatment, prevention, and seeking support. It makes people feel more isolated and ashamed, often for no fault of their own. There is no doubt that in recent years, there has been a growing movement to end this stigmatization of certain diseases, but a lot more still needs to be done to get rid of the stigma associated with liver diseases, such as NAFLD and NASH.

References:

  1. O’connor, B.J., Kathamna, B. and Tavill, A.S., 1997. Nonalcoholic fatty liver (NASH syndrome). The Gastroenterologist, 5(4), pp.316-329.
  2. Huber, D.A., 2004. Nonalcoholic steatohepatitis (NASH) syndrome. Gastroenterology Nursing, 27(2), pp.55-58.
  3. Canbay, A., Sowa, J.P., Syn, W.K. and Treckmann, J., 2016. NASH cirrhosis-the new burden in liver transplantation: how should it be managed?. Visceral medicine, 32(4), pp.234-238.
  4. Bugianesi, E., Vanni, E. and Marchesini, G., 2007. NASH and the risk of cirrhosis and hepatocellular carcinoma in type 2 diabetes. Current diabetes reports, 7(3), pp.175-180.
  5. Traussnigg, S., Kienbacher, C., Halilbasic, E., Rechling, C., Kazemi-Shirazi, L., Hofer, H., Munda, P. and Trauner, M., 2015. Challenges and management of liver cirrhosis: practical issues in the therapy of patients with cirrhosis due to NAFLD and NASH. Digestive diseases, 33(4), pp.598-607.
  6. 2022. [online] Available at: <https://liverfoundation.org/for-patients/about-the-liver/diseases-of-the-liver/nonalcoholic-steatohepatitis-information-center/nash-definition-prevalence/> [Accessed 10 July 2022].
  7. NASH, D. and Health, N., 2022. Definition & Facts of NAFLD & NASH | NIDDK. [online] National Institute of Diabetes and Digestive and Kidney Diseases. Available at: <https://www.niddk.nih.gov/health-information/liver-disease/nafld-nash/definition-facts> [Accessed 10 July 2022].
  8. Ando, Y. and Jou, J.H., 2021. Nonalcoholic fatty liver disease and recent guideline updates. Clinical liver disease, 17(1), p.23.
  9. Rashid, M. and Roberts, E.A., 2000. Nonalcoholic steatohepatitis in children. Journal of pediatric gastroenterology and nutrition, 30(1), pp.48-53.
  10. Ida, S. and Yoshimura, N., 2006. NASH in children. Nihon rinsho. Japanese Journal of Clinical Medicine, 64(6), pp.1168-1172.
  11. de Alwis, N.M.W. and Day, C.P., 2007, August. Genetics of alcoholic liver disease and nonalcoholic fatty liver disease. In Seminars in liver disease (Vol. 27, No. 01, pp. 044-054). Copyright© 2007 by Thieme Medical Publishers, Inc., 333 Seventh Avenue, New York, NY 10001, USA..
  12. Dongiovanni, P. and Valenti, L., 2016. Genetics of nonalcoholic fatty liver disease. Metabolism, 65(8), pp.1026-1037.
  13. McClain, C.J., Shedlofsky, S., Barve, S. and Hill, D.B., 1997. Cytokines and alcoholic liver disease. Alcohol Health and Research World, 21(4), p.317.
  14. Diehl, A.M., 2002. IV. Nonalcoholic fatty liver disease abnormalities in macrophage function and cytokines. American Journal of Physiology-Gastrointestinal and Liver Physiology, 282(1), pp.G1-G5.
  15. Carol, M., Pérez-Guasch, M., Solà, E., Cervera, M., Martínez, S., Juanola, A., Ma, A.T., Avitabile, E., Napoleone, L., Pose, E. and Graupera, I., 2022. Stigmatization is common in patients with non-alcoholic fatty liver disease and correlates with quality of life. PloS one, 17(4), p.e0265153.
  16. Butt, G., Paterson, B.L. and McGuinness, L.K., 2008. Living with the stigma of hepatitis C. Western journal of nursing research, 30(2), pp.204-221.

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