You’ve got to hand it to pioneering treatment

It’s not a sound most people would want to hear, but it was music to their ears.

For two years, the little finger and ring finger on Mary’s right hand had been gradually and uncontrollably curling in towards her palm.

But within just 48 hours of receiving an injection of a new drug, the doctor was able to snap them back into place.

She had been suffering from Dupuytren’s disease, sometimes known as the Viking disease because of its prevalence among people from Scandinavia and northern Europe.

The condition is not painful, and some sufferers have few symptoms beyond the appearance of bumps, or “nodules” on their palm. But for others, their fingers – most commonly the small and ring fingers – curl towards the palm, and the simplest of every day tasks becomes difficult.

Mary’s little finger had curled right into the palm, and her ring finger was beginning to twist. She could no longer write, hold a book, prepare food –even basic tasks became impossible.

For many years the only way to correct the condition was through surgery. But Mary, 69, from Davidson’s Mains, has just become one of the first people in Scotland to receive the new treatment, which only requires an injection of a drug called Xiapex, followed by manipulation of the affected hand by a doctor, which re-straightens the finger, often with the snap heard by Mary.

She recalls when she first began to notice the symptoms: “It started about four years ago. It was just tightness between the pinky and the palm, and also with the ring finger a little square of firmness on the finger.

“Almost two years ago it started to turn in, the fingers came towards the palm, because there’s a tightening of the palms. I went to the GP about two years ago and I saw a consultant in January but there was nothing to be done at that point.”

Doctors are reluctant to operate on people with Dupuytren’s unless completely necessary, because recovery can take six months or more, and there is a danger of nerve damage.

So Mary just had to grin and bear it. She says: “Every single thing you did, it got in the way. Spreading anything, or trying to cut, you couldn’t do that, and writing was another thing – everything that you don’t think about.

“They don’t like operating on it. I think it’s a last resort. There’s no actual cure to it, it comes back again, even if it’s operated on. I just carried on.”

Her experiences are typical, according to Henry Orton, trustee of the British Dupuytren’s Society, which offers support and advice for sufferers. “Once the fingers have started to bend, there are examples of ways it affects people that you may never imagine,” he says. “You can’t wear normal gloves, because you can’t get the glove on your fingers, you have to wear mittens.

“If it’s the right hand, when you meet people, you tend to find shaking hands with them a bit off-putting.

“From a leisure point of view, if you play the piano, or play golf or tennis, it becomes a bit of a restriction. And it can interfere with work, depending on the work you do – typing would be one obvious one, or carpentry, or some kind of assembly work. Then there are other, day-to-day things, like driving or cooking.”

Mary grew used to coping with the restrictions on her life, but earlier this year she read about the new treatment, which is beginning to be used in the private sector, but is not available on the NHS.

She thought that the cost – £2350 – would be worth it to win back full use of her hand. “When I read about the injections I started to think that would be a good option, because I didn’t really want to go down the road of surgery, because it takes quite a while to recover.”

She contacted Spire Healthcare, which provides the treatment, and met surgeon Chris Oliver, one of the first people in Scotland trained to carry it out. On November 23 she went into Shawfair Park Hospital as an outpatient.

She says: “You go in and you have Xiapex injected. I needed two lots, one for each finger, and they inject into the little nodules on your palm, and it was dressed, and left for two days. It wasn’t painful, just uncomfortable.

“It nipped at first for a few hours, and that night it was just that I could feel it, it was like little gremlins having a wee work about, like something was on the go.”

Two days later she returned to the hospital for the manipulation. “He pulled and it was like a snapping twig – and that was what he wanted to hear, I think. It took less than 48 hours to have straight fingers. I was delighted.”

The change has been remarkable, she says. “It’s perfect, I had it done on Friday and by Monday I could use it, and each day it’s got better. I think I’ve done everything, except heavy lifting, I haven’t lifted a full kettle but anything else, the eating and washing hair and writing, I can do again. I couldn’t write or hold a book properly, so I can do all that now.”

Mary was the first person to be treated with Xiapex by Chris, and he has four more patients lined up. The drug dissolves the Dupuytren’s tissue in the fascia, or connective tissue, in the palm of the hand, which causes the tightening. When patients return a day or two later to have their hand stretched, the band “pops” or “cracks”, releasing the fingers.

Chris says: “The traditional treatments were, well, historically nothing, before surgery. With the operation, you’d have a wound on your hand and there’d be the risk of damaging the nerves.

“This treatment allows you to have an injection in an outpatients’ clinic, so you don’t have to have an operation. The Dupuytren’s tissue stays within the hand but it allows the finger to become straight again and you get the movement back. So it’s a big advance for patients.”

Henry Orton agrees. “Up to fairly recently, if you went to see a GP they’d usually say ‘Go away and come back when it’s more severely bent.

“Once you got to a fairly advanced curve then up to recently, surgery was the only option but the problem with surgery is the recovery time can be very long, because the hand is very sensitive and there are a lot of nerves and blood supply, so it can be three to six months, or more.”

He says the new treatment is particularly useful because it can be employed even on those showing early signs of the disease, stopping it in its tracks rather than waiting for it to become problematic. “We welcome this as a new alternative, early treatment. It’s a welcome addition to the arsenal of the medical professionals, and we hope to get it available on the NHS, but not in the short term – that’s probably a campaign for next year.

“We think it makes sense to treat it early and that way you avoid some of the problems when it develops further.”

Painless but problematic

Dupuytren’s Disease was named after the French surgeon, Baron Guillaume Dupuytren, who first described the condition in 1834.

Sufferers have included Margaret Thatcher, below left, Ronald Reagan, Frank Sinatra and the actor Billy Nighy.

It is caused by a thickening of the connective tissue, or fascia, which lies beneath the palm. The first symptom is usually a small lump on the palm of the hand. Progression can halt there, or develop into a curling of the fingers towards the palm. The little finger and ring finger are the most commonly affected.

The condition is painless, but the curling of fingers can interfere with everyday tasks.

Until recently, surgery was the only treatment. A non-surgical treatment called needle aponeurotomy was introduced around 20 years ago, but is unsuitable for many cases.

The newest treatment, suitable for all – although it is not available on the NHS – is injection of collagenase. It breaks down the collagen fibres in the fascia which cause the contracture. Doctors then manipulate the hand, releasing the fingers.

Recovery time is much faster than for surgery, with many people regaining use of the affected finger within days, although it is only a treatment, rather than a cure. Just as with surgery, the condition is likely to recur eventually.

For more information visit www.dupuytrens-society.org.uk.