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The pain of being able to bend my body like a contortionist.

Byline: By Greg Tindle South Wales Echo

It was an eagle-eyed nurse who eventually gave priest Father Graham Venn the first insight into what was wrong with him. As he waited for treatment in a hospital casualty department, Father Venn pushed himself up from a chair while resting his hands on a table.

The surprised nurse turned to him and said: 'Your fingers are simply not supposed to bend like that.'

What she spotted was Father Venn's fingers curving back by 90 degrees from his knuckles.

And that moment last summer sparked an explanation for the years of pain and suffering he's endured for most of his life.

He said: 'This nurse had seen a television programme on a condition called Ehlers-Danlos Syndrome and said it looked as if that's why my hand was bending like that.'

Father Venn, 40, parish priest of St Alban's RC Church, Splott, Cardiff, did some internet research and after visiting an expert in London, he was confirmed with EDS - a complicated and incurable condition that affects the body's skin, connective tissues and joints.

The diagnosis was like a weight being lifted from his shoulders with an explanation of just what was wrong with him and what had baffled doctors for years.

'For 10 years I have been around most departments of the University Hospital of Wales - orthopaedics, rheumatology, the pain clinic, neurosurgery, neurology and even told it was all in my head.

'It's a condition that many contortionists have. They use it for entertainment, being able to bend their bodies and joints into funny positions. What you don't see is the painful side of EDS.'

Father Venn has now been waiting for four months for a hospital appointment at the UHW and hopes doctors may be able to ease his painful and aching limbs and joints.

With the benefit of hindsight, Father Venn believes he can trace the first signs of EDS to when he was about nine years old.

'My cousins remember me showing off by bending my fingers to an unnatural degree and being very flexible - I always thought this was normal but only now I realise it is unusual.'

But as he grew into adulthood, a catalogue of painful joint problems and falls and dislocations eventually resulted in Father Venn being forced to use walking sticks and today he spends much of the day in a wheelchair.

'Simple things do damage - lifting a not very heavy box or parcel can dislocate a shoulder, writing for too long causes one of my fingers to go out of control.

'Last November, I saw a brilliant professor in London, Professor Rodney Grahame. He said I had classic case of EDS hypermobility type - the relief was incredible. 'Since then I have joined the EDS support group and discovered that this affects about 1 in 5000 people. I know of a number of people in Cardiff who have EDS and most have had big problems getting help. The EDS makes my work very difficult - visiting parishioners or getting near the grave at the cemetery is now virtually impossible. 'Most have got used to the idea of a parish priest in a wheelchair now and I can make a joke of it. I have been known to say you can get meals on wheels so here is the priest on wheels.'
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Publication:South Wales Echo (Cardiff, Wales)
Geographic Code:4EUUK
Date:Mar 1, 2007
Words:554
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