With the support of rock stars and politicians, David Williams aims to pave the way for better treatment for the debilitating condit
A husband from Flintshire has enlisted the help of top rock stars to raise money to open a drop in centre for Fibromyalgia sufferers.
David Williams’s wife Jackie was just 43 when she was diagnosed with the incurable illness which causes constant pain all over the body.
After leaving his job to care for his now bed-bound wife, Mr Williams has been determined to raise funds and awareness.
Through music and art he’s managed to gather support from Peter Hook (New Order), Dave Sharp (The Alarm) and Kirk Brandon (Spear of Destiny) along the way.
Organiser Mr Willams describes how his wife went from being a “gym freak and an athlete” to completely bed bound as the illness took hold: “Once you’ve got it, you’ve got it for life.” explains the 51-year-old. “They [doctors] make life easier for you by giving you heavy medication but you never get rid of it.
“She used to be so active and now she’s only been out of the house three or four times since Christmas and even then it’s in a wheelchair.
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“It’s so hard to get diagnosed, which is a big problem for those suffering. There’s one or two doctors around that will diagnose it, but a lot of them are scared to say so because there is no cure.”
Several celebrity sufferers have spoken out about the disease, including pop star Lady Gaga and actor Morgan Freeman, but at the moment there is little help available.
Mr Williams wants to change the way the illness is managed: “When my wife was told she had it, she was given a piece of paper and sent on her way. Go away and fend for yourself. You have to learn to live with it.
“It starts in your brain. It’s a crippling disease, sufferers are living with 24 hours of constant pain because every nerve ending in your body is open at once. It’s like having hot fat poured over you over and over.
“There’s times when she can’t eat, she can’t swallow. Sometimes she has a good day and she’ll be able to sit up and have a chat but most of the time the medication just puts her to sleep. It’s horrific.
“Being a hairdresser was her life, she’d done it since she left school. Now she can barely do anything for herself. It’s stolen so much of her life.
“They say it comes from trauma but we’ve found kids that have it. When there’s kids as young as 11 with it, you know they’ve got one hell of a hard life ahead of them.
“People are committing suicide because they can’t cope with it and there’s nowhere for them to turn. The NHS can’t cope because they don’t know how to treat it, which is why we are doing what we are doing.
With big names on board, Rock Off Fibro will bring together seven bands for a night of music, with an amazing raffle all for the cause including a donation from Peter Hook of signed paintings of the famous Hacienda nightclub.
The event will see 100% of the profits going towards raising funds for a centre focussed on Fibromyalgia – which will be the first of its kind in the UK.
“You’re never going to cure it but we’re trying to get away from the heavy medication.” he explains. “The drugs they prescribe are usually opiates, which on the street is heroin. These types of drugs are not doing any good.
“So we want to open a drop-in centre where people can come and show them there are other ways to manage the illness in positive ways with results.
“We did have Carl Sargeant on board and now his son Jack is taking up the baton and going down to Cardiff to discuss it.
“If we can open one center and show them its the way forward then we can open two or three and more.
“We’ve got doctors on board, we’ve applied for grants and now we want to raise awareness of the disease.”