Four people in the tiny town of Duleek, County Meath have been stuck down with the same rare disease in the past two years. Guillain Barré Syndrome (GBS) usually only affects 50 to 100 people in Ireland every year, or approximately one in every 80,000 to 100,000 people.
The disease causes the immune system to attack and inflame the peripheral nervous system, where the body’s senses and movements are controlled. In short the disease starts at your feet and moves upwards. It can leave you completely paralyzed, or locked in. The disease's mortality rate is one in ten people and the cause of the disease is not clear.
The Health Service Executive (HSE) is now investigating this unusual situation where four males – three adults and one young boy – in Duleek, have been diagnosed.
Speaking to the Meath Chronicle, Pat O’Brien of the Louth Meath Health Protection Group said, “One of the patients ended up on life support for a period and then had to attend the National Rehabilitation Centre to learn to walk and move again.
“It is a very serious condition, but it is very rare.
“We want to the HSE and EPA [Environmental Protection Agency] to carry out a study to see what might be causing it.”
The HSE is arranging a meeting between its acting Director of Public Health and local groups concerned about a cluster of a rare and serious medical condition. The Irish Doctors Environmental Association along with the Louth Meath Health Protection Group have raised concerns over the outbreak.
The disease causes the immune system to attack and inflame the peripheral nervous system, where the body’s senses and movements are controlled.
Treatment for GBS depends on the severity of the disease. Intravenous immunoglobulin or plasma exchanges are the main treatments. These transfusions target the antibodies in the immune system to stop them damaging the nerves further.
The cause of the disease is not known. It is thought that it is possible to make a full recovery, after an extended hospital stay and rehabilitation. However, long-term complications can include loss of sensation, balance problems, muscle weakness, and extreme fatigue.
James Levin and Anthony Mullen were both diagnosed with the disease spoke to UTV Ireland about GBS.
Anthony Mullen (54) was diagnosed with the disease in 2013. It came as such a shock that he describes going to bed on Sunday night and falling to his knees when he tried to get up on Monday morning. He was completely caught off guard.
“The days leading up to it were normal. I was out on Saturday. I was a bit cold, that's it. I went to bed on Sunday night. When I got up on Monday morning, I fell to my knees. I couldn’t get back up. I didn't feel sick or feverish; my legs just wouldn't work,” said Mullen.
“It was frightening. I had my full senses but couldn't move. We rang the doctor and an ambulance.”
After being examined the doctors concluded it could be GBS.
Mullen describes the disease as “our own immune system attacks your nervous system and it strips the nerves controlling your muscles or movements. It comes up from your feet, up to your legs and sometimes it even affects your eyes. I was hoping it would just go up to my hips.
“Within a week, I was paralyzed and could only use my eyes. I ended up in the intensive care unit, got pneumonia, and had to go on a ventilator. I woke up and that's the way I was. I could only move my eyes and head. There were lots of tubes. I was like that for five weeks.
“I was completely still.”
Mullen was in a wheelchair for five months and was still “very wobbly” on his feet.
He said, “I had difficulty getting around the house. It's a devastating illness. I'm terrified I will get it again.
They verified that I had a viral infection. They think that's what triggered it. The thing is, what caused it? That's the question I have. This illness is supposed to be very rare.”
Although Mullen is now just happy to be alive, with the mortality rate for the illness being one in ten he said, “It’s turned my life upside down. I'm on medication and will be for the rest of my life. I'm a bit wobbly and need an automatic car. My arms aren’t okay.
When I came round, when I started to recover, it hit me then. I'm able to get about, but I have to bring a stick. I get tired really easy. It is the illness. It will leave a mark.”
Levin (40) was diagnosed with the disease in 2014. Mullen who had already been through the worst of GBS visited Levin when he was very ill to reassure him that there was life after the disease.
What Levin described to UTV fitted the doctors and Mullen’s description of the onset of the GBS perfectly.
He said, “I started getting a weakness in my feet. I was flat-footed when I was walking. It progressed upwards, up my legs. I began to experience extreme pain. I went into hospital and they sent me home. That went on for two weeks and accelerated from there.
“Then I got blurred vision, and double vision. One side of my face began to drop down and I had the appearance of having had a stroke. I was beginning to become paralyzed. I was brought into hospital by wheelchair. I went into A&E [the Emergency Room] in Drogheda and they diagnosed it. I had no idea what it was.”
For five weeks Levin could not move from the chest down. Then gradually he began to recover.
“I was frightened. I didn't know what was going on. Even when I was told I would get better, it didn't seem like I was going to,” Levin said. “You’re locked into your own mind and you have to deal with the situation in your own way.
"I was completely paralyzed. I couldn't move. I don't know why. I had no feeling in my face. No movement. The messages to move wouldn't translate from my brain.”
Dealing with being completely dependent and in a great deal of pain was very difficult. He told UTV, “The nurses were great. I was in hospital for two months. And, from there, the movement was slow.
“When I got out, I had hypersensitivity. It's so bad that you can't sleep with it. You can't let anything near you. Even a sheet on your bed is extremely painful. There's no relief from it.
Months later his balance is off and he has difficulty maneuvering, his face still feels strange, his speech is slurred and he gets tired easily. Levin was completely bowled over by the shock of this disease.
He said, “It’s not something I had foreseen. Paralysis is something you have from a horrific accident. I had just become paralyzed for no reason. It's hard to get your head around it.”