Melanie contracted hepatitis C as a result of treatment for von Willebrand disorder (VWD), but for decades believed that she alone had been infected as a result of an unfortunate accident.
Diagnosed with VWD in 1974, aged three, Melanie suffered terrible nosebleeds as a child. When her periods started aged 15, her education suffered as she had to miss a significant amount of school because she was unable to control her bleeding.
She was largely treated with DDAVP, apart from three occasions between 1984 and 1987 when she received cryoprecipitate. However, Melanie believes she may have been infected as late as 1989 when, at the age of 17, she was treated with the Scottish Z8 heat-treated factor VIII product after a heavy fall in the street. The consultant who treated her had asked her to return in six weeks to check for any ‘nasties’.
I’d always thought my infection was an accident, but this made me look at it differently. I was devastated.’
She may never know the exact source of her infection as all of Melanie’s medical records from that period have disappeared, but she has a document from the Scottish National Blood Transfusion Service, obtained many years later, that confirms the products she was given. When the document arrived it was headed ‘PUP study: Melanie Piesse’, which was a turning point.
She said: ‘I had no idea I was part of study as a ‘previously untreated patient’. When I received the factor VIII, I was 17 and nobody asked my consent or my mother’s. I’d always thought my infection was an accident, but this made me look at it differently. I was devastated.’
Melanie was told she had hepatitis C when she was 21 after she’d had a bad nosebleed during an asthma attack and had been admitted to hospital. Her haematologist asked her to put her bloody tissues into a hazard bin because she had hepatitis C, which was the first time she knew about her infection. Melanie said she and her mother were told it wasn’t a serious condition and there was nothing to worry about.
She went on to have children, but after the traumatic birth of her second son, a hepatologist who she’d never met before visited her and her new baby in hospital. He told Melanie that as a result of her hepatitis C infection, she would probably not live to see her son grow up.
Melanie said: ‘That prediction was something me and my family have had to live with for my whole life. I brought up my sons preparing them that I wouldn’t be there for them at some point – and that screwed them up. It was constantly on our minds.’
I felt so isolated for so many years. It was quite overwhelming to be at the opening of the inquiry and realising that everyone there knew how I felt.
After living with hepatitis C for 18 years, she underwent the gruelling treatment of interferon and ribavirin. Melanie went from weighing 13 and a half stone to seven, began to hallucinate and felt suicidal. She was incapable of looking after her children during her treatment and was permanently nauseous. Her family stepped in to support her. The treatment cleared Melanie’s hepatitis C, but she continues to suffer from chronic fatigue and other health problems which she attributes to her infection. Further health problems were compounded when she was refused an endoscopy because she was at risk of vCJD.
It was only in about 2010 that Melanie connected with others infected by contaminated blood and realised the scale of the scandal. She says she’d been told by her consultant that she was the only one who’d been infected. When the Infected Blood Inquiry began, she met even more people who’d been through the same ordeal.
Melanie said: ‘I felt so isolated for so many years. It was quite overwhelming to be at the opening of the inquiry and realising that everyone there knew how I felt. It was one of the biggest releases I’ve ever had.’
Now Melanie hopes that the inquiry will bring a ‘sense of justice’ to all those infected and affected. She said: ‘The government has a responsibility to protect everyone in this country and if that fails, they are accountable’.
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