A life less comfortable

6th October 2000 at 01:00
Arthritis is a painful disease that can strike anyone at any age - from Olympic champions to classroom teachers. With no cure in sight, sufferers have little choice but to treat the symptoms and adapt. Adam James reports

In January this year Plymouth headteacher Val Woollven was sitting in her office, immobilised by pain in her left side. She'd felt it before, but this time it was much worse. Feeling tired and seriously out of sorts, she wasn't surprised when a fellow teacher told her she looked awful. Val's 19-year-old student daughter happened to be in school that day - helping with dinner duty - and ended up driving her mother to casualty.

In hospital she was prodded and squeezed, then had a blood test. The result indicated that she needed to see a rheumatoid specialist. There was a waiting list so, in May, Val decided to opt for private treatment. The consultant diagnosed rheumatoid arthritis, a chronic immunity disorder that causes inflammation of the joints and which affects 600,000 people in Britain. The condition had started in her left hip - hence the pain on that side. The consultant told her there was no cure for this painful and crippling disease, although modern drugs could provide some relief. "The effect on me as a person, a professional, a wife and a mother has been traumatic," says Val.

Arthritis comes in many forms and has many causes. In Val's case the condition was caused by a faulty immune response, which causes the body's natural defence mechanism to attack healthy joint tissue, leading to inflammation, joint damage and pain. What began in her left hip now affects, at various times, her feet, wrists and hands. Rheumatoid arthritis is three times more common in women than men and, although it can strike in the teenage years, women are most vulnerable in their late thirties and forties.

The most common form of arthritis, however, is osteoarthritis, in which joints become damaged through simple wear and tear. Debris from damaged cartilage (the cushioning between two bones) lodges in the joint, leading to inflammation and further damage. Sports enthusiasts are particularly vulnerable; the US athlete and nine-times Olympic gold medallist, Carl Lewis, was diagnosed with arthritis a year ago, aged 38.

Val Woollven had led an active life - her hobbies were long walks and orienteering - but now 20 minutes walking the dog is as much exercise as she can take, "and not every day". She says: "At times I find it difficult to lift files from the office shelves, shake hands with visitors, cut up my meat or open my mouth wide enough to eat a cherry tomato. I spend much of my time pretending nothing is hurting and trying not to limp."

During long meetings, her hands begin to swell, and writing becomes difficult. While she is not a teaching head, she likes to spend time with her pupils. "When I'm in the classroom, I ask the children to write on the whiteboard."

The medical world has struggled to find a successful treatment for all forms of arthritis. The first step is to prescribe painkillers, including anti-inflammatory drugs such as aspirin and ibuprofen, but these do not treat the disease itself; they merely alleviate the symptoms.

Three months ago a new drug, Remicade, was released. This blocks the action of an inflammatory chemical released by immune cells and, according to some doctors, has a dramatic effect on the symptoms of rheumatoid arthritis. "No one says Remicade wipes out the disease, but it seems to benefit 85 per cent of patients," says Dr David Isenberg, professor of rheumatoid arthritis at University College London.

There is a catch, though. Treatment with Remicade costs around pound;6,000 a year, against pound;1,000 a year for traditional drugs. Dr Andrew Bamji of the British Society for Rheumatology warns that access to Remicade on the NHS could be determined more by where people live than by clinical need - so-called "postcode prescribing".

Val Woollven has not been offered Remicade to date but is satisfied that her present cocktail of medication is helping. The absence of a generally available wonder-drug - coupled with the uncomfortable side-effects such as gastric bleeding and stomach ulcers of some traditional therapies - has led many sufferers to explore self-help techniques such as relaxation, meditation, yoga, controlled exercise and massage.

While such techniques rarely feature on treatment programmes offered by hospital consultants, patients continue to document the benefits - so much so that the charity Arthritis Care has developed its own "expert programme" of self-help called Challenging Arthritis. This is a six-week course co-ordinated by 52-year-old Jean Thompson, who was first affected by arthritis as a teenager. She teaches patients to become experts in their own conditions, working on the principle that "you need to get in touch with the resources you have inside yourself".

In six two-and-a-half-hour lessons, the emphasis shifts from medical knowledge to life skills. Patients learn to handle anger, frustration and depression, and how to communicate effectively with their families and health professionals. "The way health care operates in this country, you are immediately put into the victim role," says Jean Thompson. "Yet for people with chronic conditions the needs are different. I know what is happening in my body better than the doctor does."

Many sufferers - including Carl Lewis - are also turning to complementary therapies. And in June this year, the Arthritis Research Campaign announced plans to start funding research into homeopathy, acupuncture and herbalism. The organisation says its decision to reconsider its 60-year position of funding only conventional drug research was prompted by the huge rise in the number of patients seeking relief through alternative medicines.

"Two-thirds of arthritis patients have tried complementary therapies," says ARC spokeswoman Jane Tadman. "Some are bogus and promise more than they deliver, and we do not want people to waste money. This is why we are funding the research." As for Val Woollven, she relies on her positive frame of mind to help pull her through moments of pain and despair and she has found other pursuits to replace her passion for walking. "I've just had to come to terms with being unable to do the things I used to. Instead of going on long walks with my husband I have started to write children's stories - something I have always wanted to do."

She finds her work colleagues immensely helpful. "I have had days when I have been depressed, but I am surrounded by supportive people. Everyone rallies round. For example, when I am on playground duty, my colleagues will offer to do it if I look tired. In this way I can continue."

She has not had a single day off work because of her condition, but rheumatoid arthritis is a real disability. "I cannot even get out of bed and put my feet on the floor without pain," she says. "But I am learning to live with it."

One important lesson she has had to learn is to plan "rests" throughout her day, rather than "activities" like she used to. "This means actually taking a lunch break - a steep learning curve for me."

Additional research by Dr Saffron Davies Arthritis Care: 020 7380 6500Arthritis Research Campaign: 01246 558033; www.arc.org.uk


* There are more than 200 varieties of arthritis affecting 8 million people in the UK. Osteoarthritis, known as "wear and tear" arthritis, is the most common, affecting 5 million, mostly elderly, people. Gout is another form of arthritis which affects 155,000 people, particularly men.

* More than 14,500 children suffer from arthritis - it is not just a disease of the elderly.

* Arthritis is the most common cause of long-standing illness. Up to 24 per cent of GP consultations involve arthritis symptoms.

* The causes are unknown. But specialists suspect a combination of genetic, environmental and hormonal factors. Repetitive use of joints - for example, in jobs associated with squatting and kneeling and the specialist training regimes of elite sportsmen and women - may increase the risk of osteoarthritis.

* Arthritis costs the NHS pound;500 million a year. Sufferers can pay up to pound;4,000 for housingcar adaptations and special equipment.

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