Posted: 30-Jun-2005 << BACK
Angela Gregory Health Reporter 17/5/2005
Isle of Man Examiner.
AN Onchan woman is hoping to break down barriers for people suffering from hepatitis C.
Trish Ashworth was diagnosed with the blood-borne virus recently and instantly found it is a highly stigmatised illness.
When I was diagnosed recently, I was advised that it was perhaps in my best interests not to tell anyone and perhaps even to consider having my treatment in Liverpool so that I would not be seen to be having treatment locally, said Trish, a former St Bridgets Hospice fundraiser.
Im not sure why there is a stigma attached to this disease but I would compare it to the early days of HIV/Aids, which was then seen as a highly stigmatised illness because of its associations with drug use and sexual behaviour.
Hepatitis C affects the liver, causing inflammation. It kills cells in the liver and the organ starts to lose its ability to work properly. It can eventually lead to cirrhosis and liver failure.
I cant tell you how scared and lonely I felt when I was diagnosed - even though there was a room full of people and my husband Andrew was by my side, said Trish. I thought This cant be happening. Why me?. I was told that the treatment was horrendous. It meant having a year of chemotherapy and coping with the potentially severe side effects at the end of which there was only a 50 per cent chance of success.
There was no way I could feed myself that poison. At first, I lived in denial. I didnt believe it was real. After all, I didnt feel that bad. I had gone to the doctors complaining of fatigue and general irritability and it was originally diagnosed as glandular fever. It was only after several more blood tests that the hepatitis C test came back as positive. It quickly transpired that I had a blood transfusion in Canada in 1983 - prior to blood being tested from donors - and had inadvertently contracted the virus. It has been with me for all that time.'
I still dont know why it has waited so long to show itself. Maybe I was a bit stressed out at work. Who knows? This is the worrying fact about hepatitis C. You can have it and not know about it. To think that it had been in my body for 23 years and completely undetected amazes me.
Trish was in shock for a long time.
I was also angry and frightened and I still could not believe this was happening, she said. My husband was incredibly supportive. He was with me at every hospital visit and was very reassuring. He did quite a bit of research on the internet and tried to encourage me to do the same but I was too scared to read what it had to say. I could not face reading what was going to happen to me. I remember my first words to the consultant were Am I going to die?.
She began researching on the internet and discovered a lot of information in plain language, along with contacts for other people with the illness.
I dont have to worry on my own if I get a new symptom because I have an army of people who, like me, are going through exactly the same process, said Trish. I started my treatment six weeks ago. I inject myself once a week and keep the drug topped up with oral medication every morning and evening. At the moment, I am coping well and not experiencing too many side effects.
While I am not able to work, I do keep myself busy and feel very upbeat and positive. I have regular massage to help remove the toxins from my body and, of course, I have the close support of my family and many dear friends both locally and on the internet.
Medical science is still grappling with this complex disease so I do recognise that I must help myself in order to help them.
If you have been diagnosed and want to share your experience contact Trish on tka5@hotmail.com or write to her at PO Box 23, Douglas, IM99 3HJ.
www.hepc.nhs.uk
www.hepcuk.info
