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Irish Encephalitis Survivors Welcome Support Group and Website

Irish people suffering from the life threatening disease encephalitis will today welcome the launch of The Encephalitis Society of Ireland. This new support group has been set-up by two Irish survivors to help improve the quality of life of those directly and indirectly affected by the illness.
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Encephalitis Ireland is also launching the first Irish website www.encephalitisireland.ie to raise awareness of the illness amongst relevant professionals, statutory agencies and the general public and to encourage more scientific research. The site will also provide a forum for information and discussion and will post details of regular meetings in Dublin, Cork and Galway.

The illness recently hit the headlines in the UK when Eastenders actor Joe Swash (23) who plays the character of Mickey Miller was diagnosed with a mild viral meningoencephalitis. Star performer, Liza Minelli has also suffered with the disease.

“It is a little known fact but last year around 238 people in Ireland coped with the effects and subsequent long-term illnesses associated with encephalitis,“ said Ronan Crinion, founder member of Encephalitis Ireland.

Ronan, a company Director from Dublin contracted encephalitis six years ago, aged 30 and almost died.

“Compared with other infectious diseases, encephalitis has a high mortality rate and when death occurs, it is usually as a result of the swelling of the brain due to inflammation”, said Ronan.

“Outcomes vary between those people who suffer a slight change in their mental ability but are able to return to their former work and lifestyle, and those left profoundly disabled either physically, mentally or both. Sadly, a small percentage of people affected will need to remain in residential care for the rest of their lives”, he added.

Ronan, is lucky to have survived the disease but as a result he now suffers the side effects of epilepsy, short-term memory loss and fatigue.

“I found my illness even more difficult to cope with because of the lack of a support system in Ireland. I was delighted when I finally spoke with my co-founder Callie Walsh. It was a great relief to know that there was someone else in this country that I could talk with about my concerns.

“That said, no two cases of encephalitis are identical and because current understanding of how the brain works is quite limited, the outcome cannot be reliably predicted”, said Ronan.
Co-founder, Callie Walsh is a mum of three and lives with her family in Cork. She became infected when she was 35 years of age and found the recovery period long and difficult. Although she enjoys improved health now, she still suffers with fatigue and short-term memory loss.

What Exactly Is Encephalitis?
Encephalitis means, simply, inflammation of the brain. It can strike at any age and is usually the result of a viral infection. Statistically the high-risk age groups are birth to age 7, age 16 to 25 and over 55’s.

How Can You Contract It?
Encephalitis can occur either because a virus attacks the brain directly or because an infection outside the brain triggers the body’s immune system to attack the brain (known as post infectious encephalitis ). Around 6 in every 100,000 people in Ireland will contract the illness. The viruses responsible are common viruses such as measles, chicken pox, influenza, enteroviruses (tummy bugs), and herpes simplex (the cold sore virus). In most cases the virus involved is not identified. Also, the range of possible symptoms and their rate of development can vary widely and also indicate other illnesses, so specific diagnosis can be difficult.

Encephalitis may begin with a “flu-like” illness or with a headache. Symptoms indicating that this is a more serious illness tend to follow later and can include a change in the person’s level of consciousness and possibly, confusion, drowsiness, seizures (fits) and coma. Other symptoms can include an aversion to bright lights, an inability to speak or control movement, sensory changes, neck stiffness and uncharacteristic behaviour.

What Are The Side Effects?
There is a wide variation in exactly how encephalitis affects the person in the long-term. Tiredness, recurring headaches, difficulties with memory, concentration and balance are often reported, as are mood swings, aggression and clumsiness. Epilepsy, as well as being a feature of the acute illness, may develop after the illness had subsided. Physical problems such as loss of sensations and movement and speech and language difficulties are also common features.

Treatment
Viral infections are extremely difficult to treat, as for most there are no specific antidotes. In the majority of cases, the only treatment is to provide supportive care while the diseases run their course.

Content and information courtesy of The Encephalitis Society