It’s time to make of

Warwickshire Telegraph - - FRONT PAGE -

AVE you no­ticed a post about a fi­bromyal­gia pe­ti­tion do­ing the rounds on Face­book in re­cent weeks? If you have spot­ted it but weren’t sure what it was about, you’re not alone. It’s only a lit­tle over two decades since the con­di­tion was of­fi­cially recog­nised and aware­ness around it is still rel­a­tively low (on av­er­age, it takes 10 years for people to be di­ag­nosed with it). Symp­toms can be vague and over­lap with other things – pain and fa­tigue are the main ones – but it’s in­cur­able and can be de­bil­i­tat­ing.

And this is what that Face­book post is all about. Leeann and Adri­enne Lakin, sis­ters from Der­byshire who both suf­fer with the con­di­tion, launched a pe­ti­tion ear­lier this year in a bid to get par­lia­ment to change the Equal­ity Act 2010, so that fi­bromyal­gia is listed as a full dis­abil­ity.

Since be­ing hos­pi­talised with the ill­ness early last year, Leeann, 29, has been un­able to work and needs help man­ag­ing day-to-day life and look­ing af­ter her two young daugh­ters. It’s sim­i­lar for Adri­enne, 24, who says: “I used to be a fit, ac­tive young woman work­ing three jobs and con­stantly on the go, to now where I can hardly do a sim­ple task with­out the chronic pain, fa­tigue and the rest of the joys that come along with fi­bromyal­gia.”

They’re not alone. Fi­bromyal­gia af­fects around 4-5% of the UK pop­u­la­tion, how­ever, as Dr Kim Law­son, a se­nior lec­turer in phar­ma­col­ogy at Sh­effield Hal­lam Univer­sity – who has spe­cial­ist in­ter­est in the con­di­tion – points out, up to 80% of suf­fer­ers haven’t yet been for­mally di­ag­nosed. THE con­di­tion is al­ready men­tioned in the Equal­ity Act, but cur­rently just as an ‘im­pair­ment’. Get­ting this changed, as Leeann and fel­low cam­paign­ers note, is not about ben­e­fits or fi­nan­cial gain, but would be a vi­tal step in fur­ther­ing aware­ness and un­der­stand­ing of fi­bromyal­gia – which would hope­fully help to­wards speed­ier di­ag­noses, plus better ad­vice and sup­port for those af­fected.

These things can be hit and miss, for a num­ber of rea­sons. Dr Law­son notes that the symp­toms – as well as gen­er­alised chronic pain and fa­tigue, things like brain fog, stiff­ness, di­ges­tive dis­tur­bances, anx­i­ety and de­pres­sion and mo­bil­ity is­sues are com­mon – can be vague and “com­plex”, and “there isn’t a sim­ple di­ag­nos­tic test.”

And be­cause it’s an “in­vis­i­ble ill­ness”, mean­ing people with it can of­ten ‘look fine,’ lack of un­der­stand­ing can be a source of distress. Symp­toms some­times get dis­missed as be­ing “in some­body’s head”. DR Law­son agrees “recog­ni­tion” is one of the ma­jor chal­lenges of con­di­tions like fi­bromyal­gia. “It goes right across the board for people who have the con­di­tion; their di­rect rel­a­tives, their friends not recog­nis­ing that they are ill.”

The fact there’s no clear cause plays into this, but re­search look­ing

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