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Sharing your lived experience can make a difference to others who may be going through something similar.

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Lived experience stories

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  • I have got my life back! After more than 15 years of hell, all it took was two pills a day for three months.

    I’d resigned myself to having a disease for life that would only get worse, but now I’m active and healthy and couldn’t ask for more.

    I was a classic case of how hepatitis C can remain undetected. I found out I had it by sheer accident when I tried to donate blood to the Red Cross in the 1990s.

    Although I had no obvious physical symptoms, I was assessed as qualifying for interferon treatment. A program similar to...

  • I am a 66 year old mother of two and grandmother of three who has been cured of the Hep C virus.

    I contracted the hepatitis C virus from IV drug use between 1979 and 1983. I was experimenting with IV drugs, which was quite common amongst my peers in that era. There was no public awareness about the transmission of blood borne viruses in those days.

    Fast forward to 2010 when I was diagnosed with the Hep C virus when another health problem alerted my GP to the fact that something was very wrong. An abnormal Liver Function Test resulted in...

  • I was infected with hepatitis C around 1981.  I say “around” as my life was in a pretty messy period, and there were many occasions during my adolescence and young adulthood where I could have been infected with hepatitis C. I had injected drugs for several years from the late 1970s, way before clean needle programs, and while my buddies and I tried to reduce any harm practiced, the reality was that we regularly shared injecting equipment. In 1981, three of my housemates all came down with jaundice, and were diagnosed with “non-A non-B hepatitis”.  

    By 1993, my injecting was a thing of the past. Hepatitis C had been named, and as several of my friends...

  • I’m sitting here in rural France and thinking just how lucky and grateful I am to be here.

    In 1998 I was diagnosed with hepatitis C. I had been living with the virus for around twenty years, but this was the first I knew of it. I was desperate for help and found it, through what was then Hepatitis C Victoria. I felt supported and not so alone and isolated with this stigmatizing illness, which I was mostly afraid to discuss with others. It was the first time I had really been able to talk about hepatitis and not feel ashamed....

  • As a scientist who has studied the Hepatitis B virus for over a decade, I’ve learned that Hep B is a silent disease because it doesn’t cause any obvious symptoms. It slowly eats away at your liver while you sleep soundly. It gets spread around inadvertently and without anyone knowing until the late stages of liver disease. Some people only find out that they have Hep B when they feel sick because their liver is failing; others might find out from a blood test for something completely unrelated.

    I found out I had Hep B after a routine blood test when...

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Lived Experience Network

Our Lived Experience Network is for people who have personal experience with viral hepatitis. By joining, you can help improve the information, services and support available to others.