Male victims of hepatitis C in the shadows
MANY men's lives have been dramatically affected by hepatitis C, not only those married to the victims of contaminated anti D but also accident victims, renal (kidney) patients and haemophiliacs (all of whom are male) who themselves contracted the virus following transfusions.
A middle aged man whose wife has the virus breaks down talking about it. His neighbours don't know of her condition. For a long time he didn't even tell his family. They misunderstood her tiredness, some telling her to get out and about more.
Chronic fatigue is a symptom of hepatitis C as is irritability: "I'd try to create a conversation. She'd yawn. I'd think: `Jesus she doesn't want to listen to me'. And she was sore to touch." Their sexual life was affected. "She is very conscious of sexual transmission. It really has ruined her life."
The couple have one child. Unable to fathom the deterioration of her health after the birth, he had a vasectomy to ensure she wouldn't have to go through it again. He feels sad and angry and fears his wife's further deterioration: "To think that my wife was done out of 20 years and whatever years she's left. There is no compensation for what she has. I would go to court even if I got nothing but the apology.
"My attitude is I signed up for a marriage and I soldiered on. In my head I give out. I hope for the best. I'm expecting the worst. It's part of my life now anyway.
Another man who contracted hepatitis C from a transfusion during dialysis has also got used to it being part of his life. "Death is on the cards, most likely earlier than I expected. Once I was told I had hepatitis C, my mind began to change. People ran a mile. It's like the attitude towards TB in the 1940s and 1950s. A woman I've heard of once she revealed it, her children were ostracised.
"Irish people have a thing about illness, like if you get sick you deserved it. They're brilliant at turning up at funerals. It makes me angry. They'll all be there at the funeral. But not while we're sick." After his kidney transplant in his early 20s, he thought all his bad luck chips were gone. They weren't. He was forced to retire in his early 40s due to hepatitis C. The idea of dying before his children grew up was devastating. As the sole breadwinner the family has been left in a precarious financial situation. They had to summon up the courage to ask for help from the St Vincent de Paul. Now the compensation tribunal has sorted out the financial end.
GERRY Hogan of Transfusion Positive who got hepatitis C through a transfusion after an accident can't share razors and makes sure nobody uses his toothbrush. He has to be very careful of cleaning up blood if he cuts himself.
"I've lost contact with my friends. If I go out I'm knackered by ten o'clock and wishing I was in bed. My mind seems to be in half stupor, like my IQ has halved." Mortgages, pension schemes, life and even car insurance can be a problem for men with hepatitis C.
The degree of fear of public disclosure among hnemophiliacs with the perceived consequences for themselves and their families is such that Rosemary Daly, administrator of the Irish Haemophilia Society, could not find a single man who was willing to talk about it to Man Alive.
She explains the dilemma for young men with hepatitis C: "Who do you tell? When do you tell? You meet a lady. If you tell her, she's out of there. If you wait six months, she's angry." It needs to be stressed that not all haemophiliacs have hepatitis C or HIV - the public perception is often, apparently, that they have. And the public has little idea of the limited nature of any risk to them. Fearing how their neighbours will react, haemophiliacs hide their condition from the real or imagined negativity of their neighbours.
Dr Michael Carmody, consultant nephrologist at Dublin's Beaumont Hospital, says that the public has nothing to fear from social interaction with people who have hepatitis C adding that there is only an outside chance of transmission even through sexual relations.
Dr William Murphy, national medical director of the BTSB, believes that there is a low risk of sexual transmission from female to male but that there may be a slightly higher risk from male to female. He adds that there is no medical basis and no rational excuse for social exclusion of hepatitis C patients: "It's almost medieval, similar to the way people with HIV were ostracised in the UK and US in the mid 1980s, coupled with homophobia and leprosy phobia."
Brendan Kenna who suffers from chronic hepatitis C after a transfusion says that if everybody stayed behind closed doors, nobody would know what's going on. He regrets that until now there has been so little said about the men who contracted hepatitis C: "Not a whisper. Yet there are a lot of us men. The cross is just as heavy for men as for women."
A spokesman for the Blood Transfusion Service Board points out that it has made no definitive statement of liability for renal patients or haemophiliacs and only implicitly accepted responsibility for some transfusion patients.