A meningitis centre of excellence is to be built in the west as part of a five year plan by a locally based national charity.
The facility is being spearheaded by ACT for Meningitis, a support and awareness organisation set up by Oranmore couple Siobhan and Noel Carroll who lost their daughter Aoibhe to the condition in 2008.
Ms Carroll, the chief executive of the charity, told guests at a special luncheon at the weekend, that its 2020 vision is to build a unique centre to provide “essential free support services to those affected by meningitis in Ireland as well as vital training and life saving awareness of this disease”. The centre will be named Aoibhe’s House in memory of their four-year-old daughter.
She stressed the importance of ensuring that those living with the impact of meningitis will have the vital support they need.
“Through continued meningitis awareness and education people will have the knowledge they need to seek urgent medical help if they suspect meningitis. On a daily basis we are inspired by those we meet and ACT for Meningitis is committed to being an organisation which will support them every step of the way.
She outlined that meningitis is the biggest killer of children under five years in Ireland. “While one in 10 people who contract meningitis will die, one in five will be left with severe after affects. ACT for Meningitis provides a wide range of free support service to those affected and currently supports families and individuals in 15 counties.”
Ms Carroll stated that the need for these services has increased greatly in recent years.
“In the absence of continued government funding our organisation continues to fundraise to provide these services, as required, and without a waiting list.”
She outlined that the biggest barrier the charity has faced since it was set up is overcoming myths and misinformation about the condition.
“Myths and misinformation about meningitis is a major issue,” said Ms Carroll. “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.”
Knowing the telltale signs can save lives, according to ACT for Meningitis. “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.”
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.
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,” said Ms Carroll. “Nobody should have to face this journey alone - whether you lost a loved one or are dealing with the after-effects of the disease.”
Ms Carroll pointed out that Ireland has the highest incidence of meningococcal diseasein Europe with meningitis B accounting for the majority of cases. There is a higher risk of meningitis during winter. “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 further information on the signs and symptoms of the disease or to download its awareness card log on to www.actformeningitis.ie or telephone (091 ) 380058. For more details on Aoibhe’s House and how you can get involved, visit www.idonate.ie/aoibheshouse