Ronnie launches support service for Myasthenia

FORMER Liverpool and Republic of Ireland star, Ronnie Whelan was back in his native Dublin recently to launch a support service for people with a muscle weakening disease.

At the launch of

‘Myaware’, Ronnie spoke about his awareness of Myasthenia and his daughter, Elizabeth, was diagnosed with the condition nine years ago.

“Our family experience of Myasthenia is similar to most: we went through a period of being referred from one medical discipline to another before Elizabeth was diagnosed with the condition,

? said Ronnie.

“Luckily for us, we had access to a specialist consultant in England and her treatment was undertaken soon after the diagnosis.

“I know the devastating impact that Myasthenia can have, but through quality information and the right medical care, most patients can have a good prognosis.

“This is why I am so passionate about spreading the word and sharing our family’s experience.

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Ronnie added:

“Even if you don’t have a diagnosis of Myasthenia, but have symptoms of drooping eyelids, double vision, trouble chewing/swallowing, slurred speech or general weakness in arms and legs, then you should get in touch with Myaware.

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Myaware is a new-look and expanded service to support people with all forms of the severe muscle weakening disease. It builds on the work of the Myasthenia Gravis Association and is seeking to reach out to the 300 plus people who currently have a diagnosis – or symptoms of the disease – but don’t access any support services.

Myasthenia is an autoimmune disease in which the nerve signals are attacked and damaged. As a result, there is a breakdown between nerves and muscles and often a loss in effectiveness in the legs, arms and eyes. Symptoms vary from drooping eyes to slurred speech and muscle collapse.

National co-ordinator of Myaware, Karen Clancy, said:

“Because there is a low-level of awareness of Myasthenia in Ireland, we find that people presenting with symptoms are often misdiagnosed with conditions such as ME.

“Sometimes it can take months, or even years, before it is medically established that they suffer from Myasthenia.

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Myaware provides a free helpline to GPs, patients and their families. It also organises conferences, support groups, information packs (for medics and patients) and communicates with members through a quarterly newsletter.

“The main aim in launching Myaware is to reach out to those who currently don’t access supports,

? said Ms Clancy.

“There is a significant range in the symptoms of Myasthenia, and through accessing information and hearing about the experience of other patients, people with Myasthenia can ask the right questions and secure the appropriate treatment in a timely way.

“Like any other debilitating illness, awareness can make life a lot easier for the patient, their family and their medics. Myaware is about reinforcing this awareness.

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At the event, Christina Barrett, from Tallaght, who has Myasthenia, explained how she discovered she had the condition, the impact which it had on her life and that of her family. She also outlined the course of treatment and recovery programme that she went through.

Membership of Myaware is free of charge, and the organisation does not receive any exchequer funding for its activities. All activities are funded through public donations.

For further information, visit www.myaware.ie