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Jayne's story

Jayne ayris I was diagnosed in 1993, but had probably contracted hep C in 1973 or thereabouts. I am one of the lucky 20% with chronic HCV who have not developed any fibrosis so far, but I monitor the levels of scarring on a regular basis by having a biopsy every three or four years. I also make sure I have regular blood tests and also ultrasound scans as they found a small benign tumour on my liver called a haemangioma.

Jayne Ayris - Support Group Facilitator

When I was first diagnosed there was very little information out there – even less in the UK at that time than in the States - so I travelled to America on a couple of occasions over the first few years of diagnosis to meet fellow patients and attend conferences which enabled me to learn more about the virus.

As I built on my knowledge-base, I also volunteered to co-manage an online support site and chat-room. It was in this capacity that I and a group from the site attended a London conference where I first met the co-founders of the Trust in 2003. Charles explained that they were hoping to set up a help-line within the next year or so, and asked if I would be interested in volunteering. The helpline was duly launched in 2004, and I was proud to be part of the team on that inaugural day.

Along the way it became apparent that there weren’t enough support groups and so I agreed to facilitate a Women’s Group on the third Wednesday of every month, and a ‘Living with the Virus’ group every last Thursday in the month for the Hepatitis C Trust. These support groups are in addition to the mixed group that takes place the first Monday of every month.

I know HCV is systemic and affects more than just the liver. I regularly take milk thistle to hopefully help continue to protect my liver and also take B vitamins which seem to help with the oedema that has developed in my legs and ankles. I take other supplements occasionally (although unfortunately I haven’t found anything effective for the brain-fog yet though) and I’m trying to maintain a healthy lifestyle which includes not smoking or drinking as I am very aware the damage that alcohol can cause to a hepatitis C positive liver. I am also trying to eat sensibly. I am very interested in and keenly watch the new drugs pipeline and hope that in the future more effective drugs will be approved even if they still have to be used as a cocktail in combination with interferon. (I hear something should hit the market in five years time)!

Unfortunately I had to stop working as a volunteer on the helpline in late 2005 due to a heavy professional workload which includes running the support groups here at the Trust, and am currently employed as a co-ordinator for a London borough DAAT (Drug & Alcohol Action Team).

I continue to co-manage the online support site at www.hephive.org.uk , and run both the Women's Group and also the 'Living with the Virus' group at The Trust offices. For information on dates and times click here

Hepatitis C has had a positive affect on me, helping me to put things into perspective, valuing the important things in life, and empowering me to become more proactive in all areas especially including my healthcare. I have been working quietly in the background extensively and consistently in the HCV field researching, supporting and developing groups in a supportive capacity for nearly a decade and a half now, and hope I have helped some other patients along the way.

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