Ronnie Whelan launches Myaware
Irish footballing legend Ronnie Whelan knows first hand about the effects Myasthenia Gravis can have on a family. His daughter Elizabeth was diagnosed with the condition back in 2005 after many months of being referred from one doctor to another.
So what is Myasthenia Gravis?
Myasthenia (MG) is an auto-immune 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.
Myaware‘s national co-ordinator Karen Clancy believes that there is a low-level of awareness of Myasthenia in Ireland which means many people visiting their GPs are misdiagnosed with conditions such as ME. “Sometimes it can take months – or even years – before it is medically established that they suffer from Myasthenia’, she says.
A new look for Myaware…
Launching a new-look and expanded service to support people with all forms of the severe muscle weakening disease, Ronnie said his own family had struggled to understand what was happening when his daughter first became ill.
‘When Elizabeth became unwell, we had no idea what was wrong with her. She was only 18, but she was tired all the time and even falling over. We were saying she was lazy; we were even sending her to the gym, which is the worst thing you can do because the disease weakens the muscles.
‘The final straw came when she fell down the stairs in a nightclub 10 minutes after she had arrived there. People thought that she was drunk, but she just fell with weakness. It’s the same for anyone with the disease – the muscles weaken. Those with it can fall over for no reason. We had no idea whatsoever, but – looking back on it now – there were signs, but we didn’t pick up on them, unfortunately.”
Hope to ensure better support for sufferers, Ronnie said better quality information and the right medical care will mean a good prognosis for most patients.
GPs, patients and families can access a free helpline…
Myaware provides a free helpline to GPs, patients and their families. It also organises conferences, support groups, information packs (for doctors and patients) and communicates with members through a quarterly newsletter.
You can find more information at Myaware or call them on 1800 409 672.