Guillian barr victim backs call for investigation

 One of Duleek’s victims of the rare life-threatening disease, Guillian Barré Syndrome, spoke this week about the horror of lying in a hospital bed completely paralysed and barely able to see.
James Levins from Carranstown was a fit and healthy 39 year-old when he was struck down by the extremely rare disease in February last year and, within two weeks, was totally confined to a hospital bed, terrified that he would never walk again.
James is one of the four people in Duleek who suffered the onset of the rare syndrome over the past few years and is backing calls for the cluster of local cases to be investigated.
While he has made a good recovery, he still has difficulty with balance, tiredness and nerve pain. He was a student undertaking a computer course in Drogheda when he fell ill, but is still unable to return to his studies or to work.
Calls for an investigation into a possible cluster of the disorder has been made by the Irish Doctors’ Environmental Association, along with the Louth Meath Health Protection Group and the Laytown-Bettystown Municipal District Council.
The condition normally affects one person in 80,000 to 100,000 or roughly two per county, but four cases have been confirmed in the Duleek area. Another man who contracted the disease lives close to James’s home.
“We all live within just a quarter of a mile radius of each other and all contracted the syndrome in the past three years,” he pointed out.
James recalls that he first noticed symptoms in February of last year. “Over a two- to three-week period, I had tingling in the lower ends of my feet and started to have difficulty walking. I was walking flat-footed.
“Then I started to get severe pain in my legs and, after about a week-and-a-half, I went to the A&E in Drogheda, but I was sent home because they couldn’t diagnose anything.
“Two days later, I had double vision and went back to casualty, but I was sent home again, because they couldn’t find anything wrong,” he said.
The next day, one side of his face dropped and he had the appearance of someone who had suffered a stroke and he was no longer able to walk. He was admitted to hospital in a wheelchair.
“By now, I was paralysed from the chest down. I had no feeling, the pain was gone, but I couldn’t move and had very blurred double vision and had difficulty recognising people,” he recalled.
James was diagnosed with Guillian Barré Syndrome. He said he was extremly frightened and didn’t know what was going on.
“I was told that they don’t know the cause of the syndrome and that there is no cure. They treat it by giving patients immunoglobin to boost the immune system and people usually recover to some degree.
“Even though the doctors were telling me that I would come out of it, it was very hard to believe. I was paralysed for five weeks. I was lying in bed, partially blind, and it was hard to imagine ever walking again,” he added.
“My memories of the time aren’t fully clear. I could detect that my family were very worried, but I didn’t let the idea that I could die come into my mind. I didn’t realise until afterwards how serious it could have been.”
When James began to get movement again, his muscles had suffered severe degeneration from lack of use and he had to undergo a lot of physiotherapy to learn to walk again.
James is nowhere near back to full strength yet. He still has issues with balance and gets very tired - sometimes having to sleep for 12 hours at a time, but he is doing the best he can and is hoping to regain more strength as time goes on.
James recalls it was his dad who realised that a close neighbour had the same syndrome. “I can see this person’s house from our house. I knew the man hadn’t been well, but when I got sick, my dad realised it the the same thing.”
The other patient visited James. He’d had the syndrome the year before and told him that there were two others who had it in the locality.
“It is an extremely rare disease, yet four of us in the one area have had it within the past three years,” said James, who added: “It warrants being look at. At least now people are taking it seriously.”