LYMELIGHT ?Elaine Griffin is fighting to put Lyme disease in Ireland under the spotlight. ?Pic: Frank O’Reilly
Creatively fighting Lyme disease
Artist and musician Elaine Griffin releases CD to raise awareness about Lyme disease and fund treatment
Well-known Westport-based musician and artist Elaine Griffin is on a mission to raise awareness about the risk of contracting Lyme disease in Ireland, after being diagnosed with the disease herself late last year.
Elaine has been struggling for decades now with a broad array of debilitating symptoms, for which no real explanation could be found, until she had specialist testing done at a dedicated lab in Germany last year. Griffin, who is currently out in California receiving treatment for her condition, was diagnosed with chronic Lyme disease as well as eight other bacterial and viral co-infections all carried and transmitted by ticks.
The part-time lecturer at the National College of Art & Design, Dublin, who has won many awards for her work, has vowed to use her creative skills to highlight the presence and risk of contracting Lyme disease in Ireland and find creative solutions to educating people on awareness and prevention measures needed to avoid contracting this potentially deadly disease.
“There is a very poor understanding of this disease in Ireland and consequentally there is very limited treatment options available, although the HSE did finally come out this year warning of the presence of Lyme disease here, which is transmitted by a tick bite, so that is a start,” Griffin tells The Mayo News.
Lyme disease, caused by the spirochetal bacteria Borrelia Burgdorferi, can manifest symptoms in every single body system. It attacks the connective tissues throughout organs systems, the blood, skeletal and muscular systems and the central nervous system, wreaking havoc on the entire functioning of the human body. Known as ‘the great mimicker’, Lyme disease can often be misdiagnosed as fibromyalgia, multiple sclerosis, Parkinson’s disease and a whole host of other acknowledged conditions.
“If caught in the early ‘acute’ stages of infection, and with adequate antibiotics, the bacteria can be stopped in their tracks and the complications prevented,” Elaine explains. However, when the infection goes unrecognised and adequate treatment is not provided, the infection becomes chronic, resulting in the ultimate wearing down of the immune system and the beginning of a whole host of seemingly unrelated symptoms. These symptoms can include musculoskeletal and nerve pain, to heart irregularities, endocrine dysfunction, body temperature disorders, cognitive dysfunction, digestive and absorption problems and blood disorders, to name but a few.
“While ‘acute’ Lyme disease is readily accepted here, chronic Lyme disease is a controversial diagnosis, and the medical world is split on opinions as to diagnostic tests and treatment protocols,” says Elaine.
“As a result of this, there is inadequate public awareness campaigns being conducted to warn the citizens of the real risks of contracting this disease. Lyme disease does not discriminate, you can be rich or poor, old or young – it doesn’t matter. Everyone is at risk. In the meantime, until a general consensus is agreed upon, which could take years, hundreds and thousands of people continue to contract this disease across the world, and that is what I personally find just unacceptable.”
It is for this very reason that Elaine has put on her creative thinking cap to come up with ways of spreading the word on Lyme. She is hoping to roll out a number of awareness-raising projects which over the next year or two, depending on what her health allows. The first of these to be realised is the ‘Once Bitten, Twice Shy’ CD pack, which Elaine has just launched for sale on her new website www.elainefightslyme.com.
The pack contains a copy of her recently recorded awareness-raising song, aptly named, ‘Once Bitten, Twice Shy’. “For the uninitiated, ‘Once Bitten, Twice Shy’ is, for all intents and purposes, a regular song expounding the trials and tribulations of unrequited love. However, ‘Once Bitten, Twice Shy’ is also a cautionary tale about contracting Lyme disease and the signs and symptoms one might expect to experience when bitten by the bug … and we ain’t talking LOVE, in this instance!” she laughs.
The song which is written and produced by Griffin, was recorded in Westport’s own Clew Bay Recording Studios and features the cream of local musicians, Liam, Michael and Joseph Halloran, Gert Nungesser and Tim Rogers, who collectively go under the topical band name The Tickets for the purposes of the project. Griffin herself produced all of the illustrations for the CD pack and the graphic design and layout was undertaken by local artist Peter Brennan.
“All of the musicians and artists who worked on this project have given of their time completely free of charge to help me spread the word on Lyme disease. None of this could be realised without their help and I am truly grateful to them for their extremely generous contributions.”
The CD pack also includes essential information on how to prevent Lyme disease, instructions on how to remove an embedded tick properly and a credit card style tick remover do it with.
“I have been met with so much generosity and good will towards this project. The tick-remover tools that come with the CD pack were donated by Bjorn Bagger of Safecard Denmark, who, like me, was affected by Lyme and wanted to do something to help prevent the spread of the disease.
“He put his creative mind to designing this nifty, scientifically proven tick remover card, which he has since sold over 12 million of, so that’ll tell you how widespread this problem is! He was very excited to get onboard with this project and again I am so very grateful to him for his extremely generous donation.”
The CD pack is an ideal and meaningful Christmas gift for joggers, hikers, gardeners, farmers, golfers, fishermen, pet owners and anybody who spends time in the great outdoors.
“Ten percent of total sales goes to support ticktalkireland, Ireland’s Lyme disease awareness and support group. Once production costs come out, the rest is going into my treatment and awareness campaign fund. As you can imagine, the costs of getting private medical treatment in the USA are just unimaginable,” says Elaine.
To purchase a CD pack or make a donation to Elaine Griffin’s treatment and awareness campaign fund, visit www.elainefightslyme.com. The CD packs are also on sale in a number of venues around Westport, including Kaleidescope, O’Donnell’s Pharmacy, O’Reilly and Turpin, McGing’s pub, Hewetson’s and Fabby and O’Moran Veterinary Surgery.