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Support for the silent disease

This article is from page 12 of the 2012-04-03 edition of The Clare People. OCR mistakes are to be expected so download the original SWF or the rendered page 12 JPG

TWO West Clare women are setting up a support group for people suffering from the little known condition fibromyalgia.

The condition, which is on the arthritis spectrum, affects people physically, mentally and socially.

Support from other people with the condition is essential for those who believe they are suffering alone, and up until now no such support group has existed in the county.

When Doonbeg woman Bernie Sexton was diagnosed with the condition she had never heard of it before.

She believes it affected her for many years before she sought treatment and then took another year for doctors to diagnose fibromyalgia. Ms Sexton explained that it is a very difficult condition to diagnose as it does not present in blood tests or x-rays.

It is also a very individual condition affecting everyone differently.

This can make it very difficult to explain to others and for others to sympathise she said.

Chronic pains in the muscles, fatigue, sleep problems, and painful tender points are just some of the symptoms that affect those with the condition.

Bernie’s symptoms made it difficult for her to continue working so she retrained as a librarian, a job she finds allows her to move when she needs to and sit when it is required.

“I found when I was diagnosed I was very isolated. I would have loved to have had a group in the early days,” she said. Bernie was not alone in her belief that a support group was needed in the county.

Margaret Labrum was having the same idea and together the women are setting up the West Clare fibromyalgia support group, which will service the whole county.

Ms Labrum, who was diagnosed with fibromyalgia in 2008, said the support group would not only raise awareness of the condition but also provide information, support and shared experiences among members.

She said for many people at the beginning it feels like they are going insane, as their symptoms don’t add up. She like many with fibromyalgia, has chronic pain, which can prevent her from living her life the way she would like.

“You can go at that level for a while and be fine and then something triggers a flair up and the pain is too much to carry on.”

The first meeting of the group will take place at 11am in the Kilrush Family Resource Centre on April 19 and all are welcome to attend. Further information is available from the founders of the group on 087 838 3499 or 087 6528769.

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