Rose of Tralee contestant with rare condition to highlight plight of sufferers as festival kicks off
Cork Rose Edel Buckley said helping to improve the public’s understanding of myasthenia gravis, an auto-immune condition that causes severe muscle weakness, is top of her agenda as the week-long festival kicks off today.
Speaking to the Irish Examiner, the Donoughmore native, a sufferer of the illness, said not enough research was taking place into the impact of the condition on people.
While taking part in the Rose of Tralee is an honour in itself, the 27-year-old said helping to improve the care received by anyone suffering from myasthenia gravis was the only accolade she was really focussed on.
“One in every 10,000 people are said to be affected by it, but there’s a lot of people who have it and are undiagnosed,” she said.
“This condition causes extreme fatigue, it weakens your muscles to such an extent you can barely stand up some days.
“Among teenagers and young adults, when it should be picked up, it can be dismissed as laziness or just someone being a typical teenager. But it can leave you breathless and really makes it tough for those affected.”
The Cork Rose developed the condition — Liz Whelan, daughter of Irish soccer legend Ronnie Whelan, is also a sufferer — in her early teens but was not diagnosed until aged 23, when her muscles became so weak she was unable to drive home from work.
The University of Limerick law graduate was ordered to go to the nearest hospital by her GP and “not leave until they find out what’s wrong”, at which point a blood test finally uncovered her condition.
In the four years since her diagnosis, Ms Buckley’s condition has improved significantly due to the medication she has received.
In a bid to help others fighting the same problems, Ms Buckley has taken part in the 160km, five-day Ragdoll Walk from Cork to Galway and plans to run a half-marathon later this year. And she says the Rose of Tralee event is the perfect time to raise awareness of the rarely discussed condition.
“MG is tough,” she said. “People can think it’s an iron deficiency or even epilepsy but, until it is properly diagnosed, you won’t receive the support you need.”
Ms Buckley is one of 32 contestants taking part in this year’s Rose of Tralee festival. A nationwide tour kicks off today, with the live TV broadcasts taking place on Monday and Tuesday next week.
*www.roseoftralee.ie
Myasthenia gravis is a neuro-muscular auto-immune disease that causes extreme muscle weakness.
Key signs of the conditions, which can often be mistaken for an iron deficiency or even epilepsy, include severe fatigue for no apparent reason, eye droopiness, and even difficulty in speaking at times.
Approximately one in 10,000 people in Ireland are known to have the condition, which can be easily treated after identification by a simple blood test.
However, it is believed a significant number of people living with the condition have not been diagnosed.
*Further details are available from the Myasthenia Gravis Association on www.mga-charity.ie or the helpline 1800 409 672.
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