People with the muscle weakening disease, myasthenia, can now access more information and support, following the launch of a newly expanded website, myaware.ie.

The site builds on the work of the Myasthenia Gravis Association. Currently, at least 300 people In Ireland have been diagnosed with the condition or are showing symptoms.

Myasthenia is an autoimmune disease in which the nerve signals are attacked and damaged. This leads to a breakdown between the nerves and the muscles, which can result in a loss of effectiveness in the eyes, arms and legs. There are a range of symptoms, including droopy eyelids, slurred speech and general weakness in the arms and legs.

According to Myaware national coordinator, Karen Clancy, there is very little awareness of myasthenia in Ireland and as a result, people are often misdiagnosed with conditions such as ME (myalgic encephalomyelitis, also known as chronic fatigue syndrome).

"Sometimes it can take months, or even years, before it is medically established that they suffer from myasthenia," she pointed out.

She said that the main aim of Myaware is ‘to reach out to those who currently don't access supports'.

"There is a significant range in the symptoms of myasthenia, and through accessing information and hearing about the experience of other patients, people 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," Ms Clancy said.

Speaking at the launch of the service, former Ireland footballer, Ronnie Whelan, whose daughter was diagnosed with the condition nine years ago, explained that his family's experience was ‘similar to most'.

"We went through a period of being referred from one medical discipline to another before Elizabeth was diagnosed with the condition. 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," he said.

He called on people who have not been diagnosed with the condition, but who are displaying symptoms of drooping eyelids, slurred speech, double vision, problems chewing and swallowing, or general arm and leg weakness to get in touch with Myaware.

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