Thousands suffer ballooning agony of mystery illness (AUDIO)

Thousands of North Staffordshire people have lymphoedema – but most will suffer its pain as it goes undiagnosed. Even doctors can fail to spot the symptoms. Here Sentinel Health Reporter Dave Blackhurst talks to a Premier League star and a victim

AN innocuous stub of the toe started an eight-year nightmare for dad Darren Adams.

His ordeal led to two weeks in hospital, his left leg ballooning to twice its normal size, any job prospects left in tatters and a life of wearing a special shoe and track-suit bottoms.

Nights out were cancelled because his leg was too big to squeeze into smart jeans or trousers. His social life ground to a halt.

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Listen to Andy Wilkinson praise his mum's dedication to lymphoedema

Darren became resigned to the horrors of a lower leg that was continually growing wider It eventually reached the point where it weighed 10 pounds more than his right leg.

His handicap became so huge he was even given the option of a major operation to slice his limb from knee to ankle and cut out whatever was behind the super-swelling.

The medical mystery was finally solved last year when it was found that Darren, of Normacot, was suffering from a lymphoedema – an accumulation of the colourless substance, lymph, which circulates the body tracking the bloodstream.

It was discovered that the toe injury he sustained so long ago while in the bathroom had triggered the in-born condition and thrown his lymph nodes into disarray. That was stopping the substance returning to the lymph system.

The University Hospital of North Staffordshire is one of the few in Britain with a comprehensive clinic specialising in the illness and when he had his first appointment there in September, he was amazed to find he was one of 598 sufferers under the same specialist care.

That was the turning point for Darren and although years of treatment still lies ahead, his left foot and leg have already shrunk enough to allow him to get back into normal shoes. Darren, former manager at the Longton branch of Quickfit exhaust fitters, said: "Even after that initial pain had gone it was absolutely terrifying how my leg kept growing and growing. My skin even started to flake off like orange peel.

"If I was on my feet for a day my leg would ache for days afterwards.

"I am stuck wearing track-suit trousers and cannot go out to social functions because I can't get into trousers.

"It was such a relief to find what the reason was and to be under proper treatment at last. Before that I just kept getting through elastic stockings which would split once they couldn't hold the leg in any more.

"Even though so many people have been diagnosed there are more suffering alone. I feel so sorry for them."

In his first three weeks attending the clinic, Darren attended every day for intensive treatment which involved bandaging and padding the limb to make it look like an even-diameter cylinder.

Then staff got to work on fitting highly specialist compression bandages.

These force the lymph back into the body to be excreted naturally and so far five litres of have made the journey.

Darren's condition will never be cured but the clinic's head nurse specialist, Rebecca Billingham, is confident many more litres of the lymph build up can be sent packing to bring it under control get his life back to normal.

Her immediate ambition is to get the leg narrow enough for a suit fitting so he can attend the annual ball next month at Stoke Rugby Club where son Joshua, aged 14, is a promising player. Dad has had to miss the last few because of the swollen leg.

A clinic has been set up at the Douglas Macmillan Hospice in Blurton and will be extended to four-day opening from July.