The 49-year-old from Sabah was diagnosed with hepatitis B about eight years ago and is now in the cirrhosis (liver failure) stage. He told Bernama he was initially disheartened before finding the strength to move forward and actively share information about hepatitis B and C, both of which can lead to liver cancer.

Rowen said he first began experiencing symptoms in 2007 but was only officially diagnosed in 2017. His Facebook group, “Hepatitis A/B/C Support Group (Malaysia)”, has since gained more than 2,000 followers.

“This disease is hereditary; I inherited it from my mother. Three of my siblings and I are carriers. The main factors that cause a carrier to develop the disease, leading to liver cirrhosis, include alcohol consumption, painkillers and the use of prohibited substances to build muscle,” he said.

“Cirrhosis is the final stage before it progresses to liver cancer, so when the doctor told me that I had developed cirrhosis, it was very hard for me to accept,” he recalled. “I was overwhelmed by extreme anxiety and insomnia. Every night as I tried to fall asleep, I would think about the disease and worry about the future of my wife and children.”

To cope, Rowen began learning more about hepatitis, which eventually led him to establish the online community for hepatitis patients to share their experiences and offer mutual support and motivation.

Based on his experience, Rowen said unlike HIV/AIDS, heart disease, hypertension or diabetes, public awareness of hepatitis remains low, likely due to the lack of health campaigns about the disease.

“The symptoms of hepatitis B and C, in particular, usually become noticeable only at the stage of cirrhosis or liver cancer. However, even if you are diagnosed at the cirrhosis stage, it doesn’t mean life is over. With proper treatment and regular monitoring, the progression of liver damage can still be controlled,” he said.

Rowen said his treatment routine includes blood tests every six months, a liver scan every six months, and an endoscopy once a year.

“The endoscopy is the most challenging but also the most crucial procedure. Through the camera inserted into the digestive tract, doctors can check for swollen blood vessels and determine whether small rubber bands need to be placed to prevent them from rupturing,” he explained.

Regular checkups are important because hepatitis shows no obvious symptoms until it reaches a serious stage, he stressed, adding that he now focuses on maintaining a healthy lifestyle while adhering strictly to his prescribed treatment plan.

Hepatitis B the most common

Statistics from the health ministry show that between 2013 and 2023, Malaysia recorded 49,992 cases of hepatitis B and 34,573 cases of hepatitis C.

Gastroenterology and hepatology specialist Dr Melvin Raj explained that hepatitis B is a common infection and has the highest prevalence among Southeast Asian countries compared to regions such as Europe.

“In Malaysia, hepatitis B accounts for the highest number of cases compared with other types of hepatitis. For that reason, the government made it mandatory in 1989 for all newborns to receive hepatitis vaccination,” he told Bernama.

“However, despite this preventive step, the number of cases continues to rise. In my view, this is partly due to foreign workers, such as those from Myanmar and Indonesia, who come to work here without receiving vaccinations, making them vulnerable to hepatitis B infection.”

He added that public awareness about the importance of hepatitis screening remains low, leaving many at risk of developing chronic infections. “For instance, some people only discover they have hepatitis after donating blood, when the blood is tested for diseases,” he said.

Medically, Melvin said hepatitis generally refers to inflammation of the liver, which is not always caused by hepatitis B or C viruses but can also result from medications that interfere with liver function and subsequently cause inflammation.

“For example, cholesterol-lowering drugs can cause liver dysfunction in some patients. Such cases are known as drug-induced hepatitis, a condition in which the liver becomes inflamed or damaged due to certain medications or substances. Tuberculosis medication can also cause liver inflammation,” he outlined.

Other causes of hepatitis include viral infections and immune system disorders. “The immune system is meant to protect us, but when it weakens, it can mistakenly attack the liver as though it were a threat.”

Melvin also cautioned against taking products such as slimming remedies. “These products can damage the liver, as can many supplements sold in stores or online. We can’t always be sure if their ingredients are genuine, so it’s important to be cautious.”

In addition, continuous alcohol consumption poses a serious risk to liver health.

Prevalence of hepatitis in Malaysia

According to Melvin, there are five main types of hepatitis: A, B, C, D and E. In Malaysia, hepatitis A, B and C are the most common, while types D and E are relatively rare.

Each type spreads differently: hepatitis A is transmitted through contaminated food and water, while hepatitis B and C spread through body fluids, including blood.

“A person can contract hepatitis B or C through blood transfusions, sexual contact or the use of contaminated needles, which is common among injection drug users or people getting tattoos. Sharing personal items such as razors and toothbrushes can also spread hepatitis B, particularly in prison settings.”

Melvin explained that since hepatitis A, B and C are viral in nature, common signs include fatigue, fever and body aches, although not all patients develop jaundice.

“People often associate hepatitis with yellowing of the eyes (jaundice). But not all hepatitis B and C patients develop that symptom – many assume their fever and body aches are caused by dengue or influenza and never see a doctor. The majority of hepatitis symptoms are quite general, resembling those of common viral infections.”

The good news is, patients with hepatitis A have a recovery rate of about 95-97%. “For hepatitis A, the inflammation is short-term and patients usually recover. They may experience fever and feel unwell before getting better.

“For hepatitis B and C, the acute phase is brief but can develop into a chronic condition. For example, a pregnant woman with hepatitis B faces a high risk of transmitting the virus to her baby during childbirth. As a result, about 90% of babies infected with hepatitis B at birth will develop a chronic condition.”

Melvin noted that there is hope for patients with hepatitis C as effective treatments are now available. Hepatitis B, meanwhile, can be managed through long-term treatment involving medication and injections.

“In the past, injections were the main treatment, but now we have oral medication. Taken over the long term, oral medication helps control hepatitis B by reducing the viral load. When the virus is reduced, liver inflammation decreases, lowering the risk of liver cancer.”

Ultimately, Melvin advises the public to undergo hepatitis screening, particularly young people aged between 18 and 20 preparing for higher education. “Even if you were vaccinated as a child, it’s best to get screened again after finishing school. This allows for early intervention if needed.”

Acknowledging that hepatitis remains a neglected disease, Melvin expressed hope for greater public awareness about the importance of early prevention of hepatitis.

“Health promotion activities related to hepatitis usually happen only once a year, around World Hepatitis Day. Many people take it lightly and only start paying attention when they fall seriously ill,” he said, stressing the importance of a healthy lifestyle.