Four Lyme disease patients have shared harrowing stories to raise awareness of the dire situation faced by those affected in Donegal.
The Donegal Lyme Disease Support Group highlighted a local ‘epidemic’ at today’s July sitting of the Donegal County Council.
(Pictured above: L-R; Nicola Allen, Roisin McGeever, Peter Patton, Charles Harkin)
“We don’t want anybody to go through what are going through, it is hell,” said Charles Harkin from Carndonagh.
The group seeks to raise awareness of the disease in Ireland so it can be recognised as a chronic disease and financial support may be provided to patients.
Lyme disease is a bacterial infection passed to humans through a tick bite. It can spread through breast feeding and sexual transmission. Early symptoms include a rash and flu-like illness. The disease causes fatigue, affects the memory and leads to neurological issues.
Spokesperson Nicola Allen said that Lyme disease diagnosis is a major issue.
Nicola, aged 31, contracted the infection in Canada when she was 29 years old and working in finance.
“I had a good job and life was great,” she said.
“I ended up being bed bound. I had to be carried up the stairs by my father.
“I was severely fatigued but Letterkenny General said there was nothing wrong.
“My bloods came back negative, because of this I was diagnosed with chronic fatigue syndrome.
“I came to my home country to be told don’t have it. My GP let me down and my hospital let me down,” Nicola said.
Nicola had been infected six months before being diagnosed at the Mater in Dublin. She had been donating blood during this time, and asked if Lyme Disease was being screened for in blood donations.
Nicola said the disease affected her entire life, including having a detrimental impact on her memory.
“I went from being an accountant to not knowing my four times tables,” Nicola said.
She said blood testing needs to be available in Ireland, as her bloods currently must be sent to Germany, America and Belgium.
“This is 2017 in Ireland, this is just not acceptable.”
“Our GPs are not educated. It is an epidemic and the HSE just doesn’t want to be let out of the bag.”
Nicola said she will continue to work to raise awareness of Lyme Disease.
“I will keep going as long as I am physically able to make change in the country,” Nicola said.
Farmer Charles Harkin said his health crashed after his 30th birthday. He had a rash on his arm 10 years previously and thought it was ringworm.
On his 30th birthday he said he recalled telling his wife – “if this is what 30 feels like I don’t want to be 60.”
After suffering a seizure, Charles was told by Sligo Hospital that he had stress.
Charles was a plasterer by trade, but is now unable to work.
To finally hear a Lyme Disease diagnosis from a doctor at the Mater was a huge relief, he said.
“The day he rang me to say I had Lyme disease was like giving me a million pounds. I was delighted,” Charles said.
Charles was so extremely fatigued at the time that his wife had to help him from the bed to a sofa each day. When he told a GP that he had no strength to even lift a cup he was told this was a sign of aging.
Charles brought a hard-hitting letter to the meeting, which was read out by Cllr Rena Donaghey.
Charles’ 11 year old daughter Sarah described the history of her fathers’ Lyme disease journey through her eyes.
“Why did it have to happen to my dad because his life was taken away by this cruel disease,” Sarah said.
“It was so bad I remember standing in mum and dad’s bedroom door and seeing him lying there and unable to move.”
Sarah remembered her dad missed her birthday and getting angry at being unable to pick up tools.
The relief of his tests coming back positive has changed his life for the better as he gets treatment.
“Now it is July 2017, life is great, dad is doing silage and now he is off his antibiotics,” she wrote.
Nicola spoke of the huge financial burden that comes with Lyme disease.
“This disease costs thousands upon thousands.”
“It costs nearly up to a thousand euro for treatment any month. There is no assistance with medical cards as it is not recognised as a chronic disease,” she said.
She called for more recognition of the disease – “If I died, what would the cause of death be on my death cert?”
“I would rather have it say ‘Through ignorance of the HSE’.”
The group were praised by Councillors for their presentation and assured that they will have the support of the Council in their campaign.
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