he burden of chronic illness is never easy to shoulder, especially if it is a transmissible blood-borne viral disease such as hepatitis, particularly its B and C presentations.

Having five known variants, hepatitis remains endemic in Pakistan. Each variation can cause liver damage to varying degrees depending on the aggressiveness of the virus. “Hepatitis B is the most aggressive but is also preventable, unlike hepatitis C, for which there is no vaccine and infections can only be prevented through precaution,” says Dr Israr ul Haque Toor, president of the Punjab chapter of the Pakistan Society of Gastroenterology (PSGPAK).

The virus-caused infection not only affects the physiological health of patients but can also potentially impact their lives by presenting several psychological challenges.

Misinformation, lack of awareness, unpreparedness to deal with a positive diagnosis, unwillingness to receive treatment, the cost of treatment and related lifestyle modifications are all reasons why living with a disease like hepatitis or caring for an infected person can be a challenge. However, it is not impossible. Through diligent effort, medication and close monitoring, hepatitis infections can be managed, even in their chronic phase. Whereas acute conditions can sometimes clear on their own (hepatitis A, E in all persons and B in adults), and hepatitis C if intercepted early, can be treated fully through medication.

After learning that she has hepatitis C, says Tahira*, 49, “my first instinct was to get treatment and make sure that my family remains safe. I had some knowledge of the disease because my sister-in-law had received treatment a few years prior to my diagnosis”. There are a few simple blood tests to diagnose hepatitis (all variants).

“If the surface antigen test for hep B or C comes back positive, the next step is to order a PCR to determine the viral load or, in other words, to measure the level of infection in a patient’s blood,” says Dr Toor. In the case of a reactive PCR result, determining the viral load in the bloodstream (in hep C) treatment options are the next step. In a reactive HBV PCR’s case, the following steps vary.

“Oral medication is available now for the treatment of hep C, but I received the interferon treatment (injectable),” adds Tahira.

“I had to take the oral medication for six months,” says Mohsin*, 63. “It was not easy. The medicine’s effectiveness is closely linked to its regular, timely consumption,” he adds. Talking about his experience, Mohsin says, “I was tired all the time and nauseous most days, but I was informed by my gastroenterologist beforehand of possible ‘side-effects’. The medicine was crucial to protect my liver from becoming seriously diseased so that its benefits outweighed the complications.”

Both Tahira and Mohsin agree that a healthy, balanced diet was pivotal in ensuring their recovery. Dr Toor agrees. “Unless there are other comorbidities such as diabetes, hypertension, ischemic heart disease, etc, a patient diagnosed with hepatitis must eat all foods (homecooked). White meat, dairy, fruits, nothing is off-limits.” Eating fresh, seasonal, well-cooked meals builds immunity. The doctor worries that patients who get caught in the web of local quacks often end up harming their health to the point of no recovery. “Immunodeficiency is always going to complicate matters in case of hepatitis or any other disease for that matter,” says the expert.

“As soon as my in-laws found out that I had tested positive for hep C at 38, people in the family began avoiding me,” says Sameera*, “it was a very difficult time,” she says. Sameera’s HCV PCR finally came back unreactive a few months back. She is cured of hep C but will never be able to donate blood because her blood will always carry HCV antibodies, and blood banks cannot accept donations from patients who have had a hepatitis C infection at any point in their life.

“As a society, we are still ill-informed and are, therefore, unable to fully comprehend what living with hepatitis entails,” says Maryam*, 53. “My HCV surface antigen results have been positive since the early 2000s. The virus entered my system during a dental procedure at a local clinic.” Maryam would never have known that she had acquired hep C if her skin had not turned yellow (due to jaundice), and she had not had terrible diarrhoea a couple of months after the procedure. “Not everyone gets symptoms this quickly. I was rushed to Lahore for a doctor’s appointment. The gastroenterologist ordered a few blood tests, and soon after, we knew that not only did I have hep A, but also hep C. Luckily, the PCR remained negative up until last year, and when it became reactive, I received oral treatment,” she says.

Maryam has been diagnosed with hep B recently. She is hopeful that the virus will clear on its own. “My family will need vaccination against hep B to remain safe while they care for me,” she tells The News on Sunday.

“Hepatitis B or C are not transmitted through sharing of utensils, lying in bed with the patient, or casually hugging them, but many people begin avoiding contact with the infected. In the process, they end up isolating individuals who are battling a virus that can lead to a chronic illness to bear whose burden they will probably need their close contacts’ support and understanding,” adds Dr Toor. “Empathy is key here”, says Sameera.

“There are steps that people living with hep B and C patients can take to remain safe while caring for them. Never share items of personal hygiene, avoid sharing needles (glucometers), and in the case of married couples, partners of hep B positive persons must get vaccinated,” says Dr Toor.

The most important point to remember when living with hepatitis, undergoing treatment, or caring for a patient, is that hepatitis can be successfully treated and managed. Alienating patients will only add to their burden and can badly affect their mental well-being. It is absolutely necessary that precautionary measures are observed by the infected persons and their caregivers to prevent the further spreading of the disease. However, hepatitis is not a death sentence. It does not put a stop on life. Some complications can arise, but through timely medical intervention, familial encouragement and psychological support, the disease can be defeated – at least stopped from overwhelming the patient.

*Names have been changed to protect identities

The writer is a staff member