'I survived polio as a child, but still suffer'
The disease can come back to affect people's lives years after their recovery, writes Lisa Jewell
Published 07/05/2013 | 05:00
When you think about polio in Ireland, images of children from the 1940s and 1950s instantly spring to mind.
It was the time of the big polio epidemics, caused by an infectious virus that killed hundreds and paralysed or disabled even more people. It was a frightening time for parents who watched the rapid spread of a disease through their community.
But while polio has been eradicated in Ireland, that doesn't mean that its after-effects aren't still being felt.
Thousands of Irish people who contracted polio in childhood are still dealing with the fallout of the disease or have gone on to develop Post Polio Syndrome. This condition cruelly comes back later in life to those who had previously had polio and impacts on their mobility, their health and their quality of life.
Two such people are Eddie Roycroft from Blanchardstown, Dublin, and Claire White, from Donaghmede, Dublin.
"I caught polio when I was three and a half," says Eddie, who is 60. "My mother thought it was just the flu so she brought me to the doctor. He said: 'He'll get over it soon', but she said: 'No, no, I'm going further with it'."
Eddie was diagnosed with polio and was admitted to Cherry Orchard Hospital, which served as a fever hospital at the time. For the next 18 months, Eddie stayed in the hospital with no visits home, as per medical advice.
"My mother used to come over and visit and my father and my sisters would come over if they could at the weekend. But my family couldn't come in and see me – they could look through the window or there'd be a rope across the room and there'd be a few people there that, you know, they'd shout across at their children."
At one stage, Eddie was on the verge of being placed in the iron lung, a contraption designed to help polio sufferers who experienced breathing problems, but his condition slightly improved. He was later sent home and underwent rehabilitation.
"I never thought I had anything wrong with me. It never dawned on me when I went to school and like at the sports day, nobody would want to tie up with me for the three-legged race. Or when I was playing football in the street, why I was always last to be picked and I was always in goal. It didn't register to me that I had a bit of a limp."
Eddie went on to work in construction and then became a taxi driver. He and his wife had a family of five children.
"In 2002, I started getting aches and pains and I thought it was my kidneys. So I went to my doctor and I was sent to a specialist. She examined me and said it wasn't kidney problems. She just happened to ask did I have any other illnesses in my life and I said I had polio when I was three and a half but I was fine.
"She said: 'No, they've discovered that the virus that affected the nerves and muscles in your body can affect you later on'."
Eddie was referred to consultant neurologist Professor Orla Hardiman, who treats many Post Polio Syndrome sufferers in Ireland.
"It's a nightmare – when you had polio as a youngster, okay you couldn't walk or you walked with a limp," says Eddie. "But there are so many things tied in with the post polio – the fatigue, the lack of sleep because of the pain in my back, getting cold very easily, the pain and aches. Things you never thought would happen to you."
It's 60 years since Claire White was diagnosed with polio but it is still affecting her today.
"I got it in 1953 – during one of the epidemics," she says. "I was two years old at the time. They thought I had kidney problems but it was only after the fever left that they put me on the ground to walk and then they realised I had a limp."
Claire was in and out of hospital over the years and had an operation on her leg when she was 14.
"Then soon after that you were discharged. They thought you were at a level where nothing could be done for you and your limp wasn't going to change from that time onwards."
Claire went on to have three children and worked for more than 30 years as a cleaner. She wasn't to know that having such a physically demanding job wasn't good for the after effects of polio.
"As the years went by, my leg got weaker and weaker and then I had to start using a leg brace which I hadn't used since I was a kid. That kind of came as a shock and then all your other limbs – your back, your good leg – they're all becoming weak and they just don't work like they used to.
"And it's very hard because you just feel everything is letting you down. Your body is letting you down."
As well as her leg brace, Claire now has to use crutches to get around. Eddie has a walking stick but also has a wheelchair as he can't walk long distances. Like many other people suffering from Post Polio Syndrome, both Claire and Eddie have had to reluctantly give up work.
The Post Polio Support Group, which celebrates its 20th year in existence this year, provides help to people like Claire and Eddie.
Around 7,000 Irish people had polio and it's estimated that 60pc of them have Post Polio Syndrome. It's under diagnosed and the Post Polio Support Group is trying to reach out to people who have the condition, particularly because it is degenerative and needs to be managed as early as possible.
"The reality is that these people are struggling," says Lillian McElvaney, services co-ordinator with the organisation.
"Some people have had such hard lives and now they're hit with this on top of it. It's really heartbreaking – you could imagine having had a difficulty in your life and thought God, I can retire now and then this all happens."
Microsoft founder Bill Gates came to Dublin earlier this year to meet with Tanaiste Eamon Gilmore. Amongst the topics discussed was the worldwide attempt to eradicate polio, and Gilmore was reported as saying: "Ireland is very much involved in making polio history."
"For Eamon Gilmore, knowing that polio survivors are not automatically eligible for medical cards, knowing that Post Polio Syndrome is not on the long-term illness scheme – it's very insulting to those people," says Blaise O'Hara, also from the Post Polio Support Group.
Lillian adds: "People understand the idea that polio was here in the '50s but they don't realise that there's a sting in the tail and that it comes back at people. And the likes of Eamon Gilmore will be thinking in terms of 'It's in the past' and has no appreciation of the fact that those people are in dire straits now."
The organisation has seen its HSE funding cut year on year but demand for its services has gone up.
"Our membership is ageing and due to the degenerative nature of the disease, their needs are increasing," says Lillian.
Callipers, custom-made shoes, walking sticks, stair lifts – none of these come cheaply and that's why the group wants polio survivors to have automatic entitlement to a medical card.
Its other priorities are to raise awareness of the after-effects of polio, particularly amongst medical staff, increase the number of neurologists and allow polio survivors to get speedy access to the services they need.
Claire White spent a year battling with bureaucracy until she was finally granted an invalidity pension.
'I was turned down first because they said I was fit to work even though they hadn't sent me for a medical, so I had to get them to review it. I found it very stressful – it was the most stressful time in my life applying for it."
Eddie Roycroft says there have been hard times. His condition really started to kick in during 2007 but he says the birth of his first grandchild, Caitlin, that year came at just the right time to lift his spirits.
"People who've had polio don't dwell on what we've got wrong with us – it's affected each of us differently," he says.
"There are some in wheelchairs, some people have callipers and some have sticks. We try to manage. We're not looking for lots of money from the Government but if they could just accept what we are going through and help us in any way they can."
• The Post Polio Support Group can be contacted on 01-889 8920 or visit www.ppsg.ie