Thirty years of cold and painful hands

By Pat Hagan

Anne was a promising tennis player

Imagine plunging your hands into ice until your fingers go dead and the pain becomes unbearable.

That's the feeling that has plagued Anne Mawdsley since she was diagnosed with Raynaud's disorder almost 30 years ago.

Quite by chance, she developed the condition after routine surgery.

To this day, doctors are unable to explain why a minor procedure would have brought on the incurable condition.

Within six months I had developed gangrene in one of my fingers. Anne Mawdsley

"I had an operation for my varicose veins and when I came round my hands were dead," said Anne, who was aged just 33 at the time of the surgery, back in 1975.

"They diagnosed me with Raynaud's. But nobody seemed to know anything about it and there was very little help available.

"The deadness did not go away and within six months I had developed gangrene in one of my fingers and was told I would have to have it amputated."

DIY research

Shocked by her prognosis, Anne refused to let doctors cut her finger off and instead threw herself into researching a condition that, although first diagnosed nearly 150 years earlier, remained little known.

"I was a PE teacher and a tennis player for the county. But I was obviously genetically predisposed to whatever sparked it off.

"Nowadays, consultants say these conditions can be brought on by viruses, chemicals and drugs."

Raynaud's is a condition where the blood supply to fingers and toes - and occasionally the ears and nose - is interrupted. They become white and dead looking, then red and burning.

During an attack, there can be severe pain, numbness or tingling and the condition can often be brought on by exposure to cold, a slight change in temperature or even anxiety.

Workers who use vibrating tools often develop a form of Raynaud's known as Vibration White Finger.

But it can also strike spontaneously and without any obvious trigger. One of the mysteries of the disorder is that it affects nine times as many women as men.

Different forms

The mildest and most common form is known as primary Raynaud's.

This can often be treated by wearing warm clothing and avoiding sudden temperature changes, although some patients need to take drugs for pain and ulcers.

Alternative remedies are also popular. A trial carried out at Aberdeen University last year showed herbal supplements containing gingko biloba reduced the frequency of attacks by around 70%.

However, secondary Raynaud's, which is thought to affect about 7,000 people in the UK, is a sign of more serious and potentially fatal disease.

Several years after her diagnosis, Anne discovered she had secondary Raynaud's.

She was found to be suffering from a condition called scleroderma, which can affect the heart, lungs, and digestive system and cause a build up of calcium under the skin that sometimes has to be surgically removed.

"I had been desperately looking for anything that might save my fingers - I even wrapped them in honey because I had heard it was a great healer.

"By this stage I had three or four ulcerated fingers on each hand."

Experimental treatment

She underwent an experimental treatment she had heard about on the radio, which involved changing her blood and giving her synthetic plasma.

It worked but the treatment had to be stopped because of lack of funding.

Appalled at the lack of help for sufferers, she set up the Raynaud's Association in the early 1980s and has been running it ever since.

Only last week she took part in a sponsored swim - with sharks - to raise money for the cause.

Over the years, it has generated over £7m for research but Anne believes much more is needed if lives are to be saved.

"It often affects young women and we have lost quite a lot of our members.

"Last year, we even lost a 12-year-old girl to it. Awareness is improving but there's still a long way to go."