A less known disease

MG is one of the lesser known autoimmune diseases – it can be treated and contained

FOR MOST people the strain of not knowing what illness they have can cause untold stress and it is worse still when it happens to their children.

Former Ireland and Liverpool legend Ronnie Whelan and his wife Elaine had no idea what was wrong with their eldest daughter Elizabeth when she was a teenager.

Her finger would shake a lot and she exhibited classic symptoms of ME (myalgic encephalomyelitis), chronic fatigue syndrome, also known as yuppie flu.

She was constantly tired and her co-ordination started to deteriorate.

His daughter’s condition has prompted Whelan to embark on a walk around Ireland next month to raise awareness of myasthenia gravis and funds for the Myasthenia Gravis Association (MGA) which is based in Derbyshire but provides support for sufferers in the UK and Ireland.

MG, as it is known, is one of the lesser known autoimmune diseases which include multiple sclerosis and rheumatoid arthritis.

It causes a severe lack of co-ordination and can induce fatal heart failure, but it is also treatable and can be contained.

About 400 people in Ireland are known to suffer from it, but Ronnie says there are “two to three cases for every one we know”.

“When you say the words Myasthenia Gravis in Ireland, they look at you as if you were from a different planet,” he says. “We’re trying to get the awareness because there is so much misdiagnosis out there. When Elizabeth first had it, we were mainly told it was yuppie flu where you are just wasted and tired all the time.

“Once it progressed with Elizabeth it was a case of falling down stairs, falling over in the street and not being able to pick herself up. We thought she was just being a lazy, clumsy teenager. We were sending her to the gym and making her walk which is the worst thing you can do for Myasthenia sufferers. The more they do, the weaker the muscles will get.”

Her condition led to cruel taunts which heightened the family’s anxiety. “Not knowing was the worst parts for us as parents,” he says. “It was very distressing to hear your 18-year-old daughter being laughed at in the street when she could not get up off the ground.

“One woman said ‘you want to put more lemonade in your vodka’ because she had fallen over in the street.”

It took several doctors and eight months before Elizabeth was diagnosed with MG in 2003. She had to have a plasma exchange which saw her on a drip for a week and she also had to have a thymectomy – the removal of the thymus gland behind the chest wall which is a common procedure for patients with MG.

Along with having 53 Irish caps and scoring that never-to-be forgotten goal against Russia in the European Championships in 1988, Whelan is probably the most decorated Irish footballer, having won six League title medals, three FA Cup, a European Cup and three Milk Cup medals with Liverpool during the club’s halcyon period in the 1980s.

Nevertheless, he has had to prepare himself well for the walk which will see him cover more than 150km in five days starting at the Western Way in Co Galway, moving on to the Slieve Bloom mountains in Co Offaly, followed by St Kevin’s Way in Co Wicklow and from Greystones to Dublin from April 30th to May 4th.

“I’ve kept fairly fit since I left football. I’ve also had to give up bread and beer and wine and I lost a stone and a half as a result.”

His daughter Elizabeth says she is now able to live a “normal life” as a result of taking steroids. “If I keep topped up on the medication, I’m completely fine.”

She will join her father for the last leg of the walk. “When I was in hospital, none of the nurses seemed to know what I had and that was so frightening. That’s why we need more awareness.”