Around 10 million people in South-East Asia are living with hepatitis C. In this blog, Misbah* recalls what it was like when members of her family were diagnosed with the virus and the stigma which they faced.
My family didn’t know much about hepatitis C, but my parents, brother and sister were diagnosed with it in Pakistan.
It was tough to disclose this kind of news to family or community members since there is a stigma attached to hepatitis C where we live due to a lack of awareness. People are judgmental towards diseases, make wrong assumptions, and spread rumours that turn into gossip.
Many years ago, treatment was given via injections and wasn’t available in Pakistan. My father had to order it through a GP from America, which was costly but necessary. The pain from the injections was excruciating, and my family lost a lot of weight as well as their appetite. We didn’t disclose this matter to our extended relatives and dealt with it ourselves without support.
My father faced additional financial and emotional stress from watching his family endure such harsh side effects during the treatment and facing the risk of losing his family members.
The doctor didn’t explain how my family was infected with hepatitis C, but my father assumed it was from the water, so he fixed the water filter at home. Of course, this is not how hepatitis C is passed on as there needs to be blood-to-blood contact for someone to contract the virus.
The real transmission route was never established but often hepatitis C is passed on in Pakistan when medical equipment hasn’t been steralised or needles for vaccinations have been reused.
Information about hepatitis C has not always been easy to access in Pakistan and people may not know that they could have been at risk if they received medical treatment.
Because of the lack of information given to my family at the time, we will never know how they got it but they worried constantly about passing it on to other people. It was a traumatic and emotional journey for all of us.
My parents have since passed away, my sister has moved to Dubai, and my brother still lives in Pakistan and has undergone the required treatment.
At my workplace, one of my colleagues told me that she had hepatitis C in the past, and she informed me of the transition routes. This inspired me to take hepatitis C awareness training with The Hepatitis C Trust, and I finally learnt more about how the virus is spread.
Since then, I have become a volunteer with The Hepatitis C Trust to raise awareness as well as to help remove the stigma that is attached to this virus so people can get the proper treatment and support that they need.
My family’s experience demonstrates that information about hepatitis C has not always been easy to access in Pakistan and that people who have since moved to the UK may not know that they could have been at risk if they received medical treatment in Pakistan.
If you are reading this and think that you or your family members may have been exposed to hepatitis C, ask your GP for a test. Hepatitis C can cause serious complications the longer it goes untreated but it is now curable after just a few months of taking tablets. Don’t delay; get tested today!
*This story was written under an alias. Names have been changed on the request of the author.