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Sufferers of 'invisible illness' fighting for rights and research

 

Experts believe that the majority of people with fibromyalgia still have not been diagnosed. Abi Jackson reports on the Facebook campaign that hopes to bring about some much needed awareness for this poorly-understood condition.

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 - that might be because you're not very familiar with fibromyalgia.

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 many other things - pain and fatigue are the main ones - but it's incurable and can be very 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 last year, Leeann (29) has been unable to work and needs help managing day-to-day life and looking after her two young daughters. And it's similar for Adrienne (24) who used to hold down three jobs, but can barely now do a simple task.

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 points out, up to 80% of people who have it probably haven't yet been formally diagnosed.

Better understanding

The condition is already mentioned in the Equality Act, but 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 help towards speedier diagnoses, plus better advice and access to support and treat those affected.

Dr Lawson notes that the symptoms can be vague and "complex", and "there isn't a simple diagnostic test; there's no blood test or X-rays, or anything like that". As well as generalised chronic pain and fatigue, symptoms like brain fog, stiffness, digestive disturbances, anxiety and depression and mobility issues are common.

And as it's an 'invisible illness', meaning people with it can often look fine on the outside, lack of understanding can be a huge source of distress. Symptoms sometimes get dismissed or misunderstood as being "in somebody's head".

Real illness

Dr Kim 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, so the level or awareness in their direct lives is very low," she says.

Finding hope

While chronic, things like CBT to help develop coping strategies, being physically active and drug therapies to help address specific symptoms can all help manage fibromyalgia.

Leeann and Adrienne's petition has already racked up more than 31,000 signatures - but they need to hit 100,000 to really move things on.

To find out more, visit www. facebook.com/fibrogetinto parliamentmakeachange

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