Overcoming misinformation - biggest barrier facing national meningitis charity

A Galway based national meningitis charity says the biggest barrier it has faced since it was set up three years ago is overcoming myths and misinformation about the condition.

Siobhan Carroll, who formed ACT for Meningitis with her husband Noel after they lost their four-year-old daughter Aoibhe to the infection in 2008, says there is a lot of confusion among parents about both symptoms and vaccinations.

“Myths and misinformation about meningitis is a major issue,” says Ms Carroll who lives in Oranmore. “This includes confusion about the signs and symptoms of the disease with some parents believing that you must wait for a rash before being concerned about a meningitis diagnosis. Other myths include the belief that children are vaccinated against all types of meningitis.

“We found that many parents believe their children have been vaccinated against the condition; however, they are only vaccinated against certain types of meningitis.”

The charity, which celebrates its third birthday this month, says knowing the telltale signs can save lives.

“We are delighted to celebrate three years supporting families affected by the devastation of meningitis. However, we want to take the opportunity to urge parents to be aware of the signs and symptoms of the disease and stress that each case is different, for example, the commonly known symptom of a rash does not always appear.

“Meningitis is easily misdiagnosed; the symptoms can be flu-like, appear in any order and some may not appear at all so you must trust your instincts. Children under five are most at-risk while 16 to 24 year olds are the second highest at risk age group. However, any one of any age can get it. Knowing the signs and symptoms, ensuring vaccinations are up to date and trusting your instincts, is the best protection against this disease.”

A survey carried out last year by the charity revealed that more than four out of five Irish people mistakenly believe a rash is one of the first symptoms of the condition.

ACT (Aoibhe Carroll Trust ) for Meningitis supports more than 100 families affected by the devastation of this disease. Its services include free counselling, one-to-one contact with someone who has experienced a similar situation, free family support days at which parents meet while their children play together, creative therapies, including play and art therapy which helps children deal with the impact of the disease, as well as alternative therapies.

“As a mother who lost my own daughter to meningitis I know how important it is to have support and understanding,” says McCarroll. “Nobody should have to face this journey alone - whether you lost a loved one or are dealing with the after-effects of the disease.

“When one of our service users turns to us and tells us the support services her son availed of have enabled him to become more sociable and build friendships he didn’t previously have, a mother who has lived with a child who has serious side affects for 17 years now no longer feels alone and a bereaved father who was searching for the past 19 years for support now receives it from charity...This is why ACT for Meningitis will continue to be the voice of meningitis, why we strive to rebuild lives and continue to raise awareness of this life changing disease.”

Ms Carroll outlines that Ireland has the highest incidence of meningococcal disease in Europe with meningitis B accounting for the majority of cases. Meningitis kills one in ten of those affected and can leave one in five survivors with long-term disabilities such as brain damage and hearing difficulties.

Symptoms can include: fever, vomiting, headache, limb pain, neck stiffness, sensitivity to bright lights, and confusion. A rash may also appear in some cases. Symptoms in babies can include: becoming floppy and unresponsive or stiff with jerky movements, irritable and not wanting to be held, unusual crying, vomiting, loss of appetite, and reluctance to wake-up.

There is a higher risk of meningitis during winter, she explains. “As people spend more time indoors and with close contact germs are spread more easily. Also, coming down with a cold or ‘flu may weaken your immune system making you more susceptible to the disease. There is at least one case of meningitis each day in Ireland.”

For more information on the signs and symptoms of the disease or to download its awareness card log onto www.actformeningitis.ie or telephone (091 ) 380058.

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