A mother of three who has to take 18 lots of medication daily to control her chronic pain condition visited Westminster to speak to MPs about giving sufferers a voice.
Ruth Benton, who is mum to Jessica, 23, Megen, 20 and 11-year-old Tom, was diagnosed with complex regional pain syndrome (CRPS) in 2002 after first suffering symptoms when on a family holiday in Florida the year before.
Symptoms include persistant burning, stabbing or stinging pain in limbs, joint swelling and stiffness, hot and cold skin, trouble sleeping and difficulty moving.
Mrs Benton and eight fellow sufferers recently met with MPs at Portcullis House in Westminster where they discussed the possibility of an all party parliamentary group to give those with the syndrome a national voice.
Mrs Benton, who is married to husband Matt, said: “There are only two specialist CRPS centres in the UK – in Bath and Liverpool.
“If we form this group and have an elected chairman, it will mean we are much stronger when we are lobbying our cause in Parliament.
“We need six MPs and at the moment, we have four who said they would want to join if they get re-elected and four who said they want to if they are elected.”
The plan is, once the elections have been and gone, Mrs Benton and her fellow sufferers will send out letters to the relevant people to let people know what they are doing and set the ball rolling.
The former teacher was forced to take early retirement from her beloved job teaching travel and tourism at Aylesbury college in 2006, and now she also suffers with osteoarthritis and Prinzmetal Agina which she has to take medication for daily.
She and her family moved into a former council house in Ivinghoe Aston in March 2012, and despite her condition Mrs Benton says they are happy.
She said: “In the up coming elections I plan to stand as a parish councillor, because even though my body is ruined but my brain is ok – most of the time! My biggest supporters are my husband and children and I’m their biggest fan too!
“I live with CRPS every minute of every day, but it is not who I am. I am in pain, but I am not a pain!”