Three women, including one from Lancashire, who were infected by contaminated blood products have told of the “magical” relief of meeting each other through the Infected Blood Inquiry and realising they were not alone in their health struggles.
Sue Wathen, Joan Edgington and Nicola Leahey were all infected with hepatitis C.
The three met through the inquiry and are now part of a group that call themselves “blood friends”.
Ms Leahey, from Lancashire, had blood transfusions in 1975 and 1980 from which, she found out following tests in 2009, she had contracted hep C.
Ms Edgington, of Somerset, was infected in 1991 after receiving a blood transfusion following surgery and diagnosed a few years later, while Ms Wathen, from Northamptonshire, was diagnosed in 2014 but doesn't know when she was infected as her blood records "disappeared".
The three women said how unwell they had been in the years between infection and treatment, and in some instances during treatment and afterwards.
Ms Leahey said she took early retirement because she constantly felt “extremely tired” in the years before the infection was discovered.
She told of how the exhaustion continued as she underwent treatment, detailing going from being an “active” person to “being in bed for half the week in a black room”.
Ms Wathen's friends labelled her "sickly", while Ms Edgington said she had "chronic fatigue" before diagnosis.
The group described meeting each other, and others infected and affected, as “wonderful”.
Ms Leahey said: “Because you are on your own when you’re diagnosed and then suddenly the whole world opens up to you, that actually you’re not the only one, and there are hundreds, thousands of others out there.
“It’s just that support, it’s that knowledge that we can just speak to somebody and they know how we feel – the desperation.
“There’s the good and there’s the bad, there’s the positive moments to share, you know, we’ll talk about the grandchildren and things like that, but we’ll also be there for each other to know exactly, when you’ve got a bad day and you’re feeling completely zonked out, the negative thoughts, the worry that what is next, you know, are we going to be the next statistic and not be at the next meeting.
“And it’s that insecurity, but being together as a group, we’ve got that security.
“We all say, we wouldn’t be here as strong if we weren’t all together.
“We call ourselves blood friends.”
Ms Leahey said she lost purpose when she was struggling with treatment, but found it was renewed in the support group she discovered.
“I just lost the purpose, why was I living,” she said.
“I was a burden to people, rather than the matriarch of the family, which I was known as.
“Now that we’ve got our group of friends, we’ve got a purpose.
“We’re here to support each other. We’re here at the end of the phone or WhatsApp or whatever. We’re here. I mean, my aim is to make everyone laugh if they can, you know, just smile, and it helps.
“That’s my purpose in life now, is I want to find other people who we can help, who have discovered they’ve got it. People out there who haven’t discovered they’ve got it yet, I want to pass that message on.
“But that’s our purpose now is to help and support people and to believe again, to believe that there is life after hep C and we have to keep on together.”
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