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. I also joined a forum supported by Hepatitis NSW. Then there was no stopping the conversations.

The discussions and information enabled me to keep up with treatments and current research. I had my first hep C treatment in 2003, after being diagnosed with a blood cancer, most likely caused by my hepatitis. That treatment was difficult, but worst of all unsuccessful. A lack of hope was the hardest thing to come to terms with, as at that time there were no other treatments. 

I researched and kept in contact with those who knew much more than I did, and eventually found a clinical trial investigating new types of treatments. After some initial success the trial finished and so did my body’s response. It felt like such a tease to be free from the virus for a short time, only to have it return. Not only did the hep C virus return but also the lymphoma became very aggressive requiring immediate treatment and a stem cell transplant.

At this time, I was on the Board of Hepatitis Victoria and involved with Hepatitis Australia. It seemed a pity to have learned all that I had and not to share and support others with that knowledge. I was also very keen to advocate for new hep C medications to become available and on the PBS for everyone in Australia to be able to access.

The cancer treatment had very severe side effects and I had a battle for my life. My general health was very poor and a six-month stay in hospital had left me debilitated and with a cirrhotic liver. 

New effective treatments were just a little slow in becoming readily available for my health and fortunately, I was granted compassionate access to life saving treatment with new [direct-acting antiviral] medications.  This amazing treatment was able to not only kill the virus forever but also to enable my liver to settle down and reduce the risk of my lymphoma returning.

So, here I am now taking a break from my work on the Board of Hepatitis Australia, knowing that every person in Australia has access to these wonderful medications that cure hepatitis C.

How lucky am I. 

Au revoir. Bien tot.