Real bodies: Far too young for this

Saturday afternoon in a central London gym and a small group of twenty- and thirtysomethings are earnestly working out under the watchful eye of their instructor. A young woman with a shock of orange and red hair, pierced nose and a brightly coloured crop top is bending and stretching to the music. In front of the mirror, a gaunt-looking young man with a ponytail and faded T-shirt and tracksuit bottoms is lifting weights. Nothing unusual in this, you might think. But sitting down on a wooden bench I almost impale myself on a walking stick and am reminded that this is no run-of-the-mill exercise class, nor are any of these people your average fitness fanatics. They are all young stroke survivors.

Not that you could tell. Donal O'Kelly looks tanned and fit as he strides over and shakes me firmly by the hand. Until a few years ago he was a successful and highly paid barrister. Then one day when he was in his early forties, he collapsed in court and his life changed. Now, despite disability, he is director of Different Strokes, a charity he set up to advise young people who have had strokes. He is an enthusiastic evangelist for a group of people he claims is largely ignored by the medical profession.

"Young people can make excellent recoveries if they have access to proper rehabilitation," he says. Hence the exercise class. However, he is quick to point out that the once-a-week workout involves much more than just getting arms and legs working again. "It's the social gathering in the pub afterwards that is often the most therapeutic," he smiles.

Most people mistakenly believe that strokes are something that only happen to older people. But each year 1,000 people under 30 will have their lives changed forever by this disabling condition. Nobody understands why young people have strokes, but 85 per cent of them are caused by a blood clot in the brain. The prognosis is not brilliant; one-third die, one-third are dependent on others and one- third manage to live independently again.

Strokes classically cause weakness on the opposite side to the one where the blood clot has occurred. So people who are right- handed, for example, may find they are paralysed down the left side of the body. Sometimes, they also have difficulty expressing themselves or understanding what other people are saying to them, says Dr Philip Bath, Professor of Stroke Medicine at Nottingham University.

And although high blood pressure, smoking and being overweight increase risk, they aren't the only factors causing strokes in younger patients. It is unusual for 25-year-olds to have high blood pressure, and although lots of young people smoke it is unlikely to be the cause of a stroke until they are older. "The likely cause is inherited conditions to do with the way their blood clots," says Dr Bath.

Amanda Crawford was a paragon of virtue in terms of stroke risk. She kept fit, went dancing three times a week, rode her bike to work and never smoked. Like most strokes, Amanda's came out of the blue with no warning; at the age of 26 she found herself thrown into a world she, too, had previously thought of as the domain of the elderly.

She had gone out for a meal with her father but "felt a bit weird" all evening. She'd also had a bad headache. "I was asleep when it happened so I had no idea I had had a stroke. I got up the next morning, had a shower and my dad found me standing naked in the bathroom trying to put on my make-up. It was everywhere. When he spoke to me my words came out all jumbled up." In the half an hour it took to get Amanda to hospital she had lost all sensation on her left hand side.

It took a few weeks for the full force of what had happened to sink in. Amanda's stroke left her frightened and confused. She couldn't walk or speak and had lost control of her bladder. Experts now believe that the key to a good recovery in stroke patients is immediate treatment. "It is vital to have a CT scan as soon as possible," says Dr Bath, "so that doctors can tell if it is a blood clot, in which case clot-busting drugs may be appropriate and can limit damage to the brain."

Amanda was unlucky. She had to wait all day in casualty to be seen by a stroke specialist and didn't get a scan until the following day. "We know now that we lost vital hours because we didn't realise the importance of the scan," she says.

Many young stroke patients find the seemingly endless road to recovery extremely frustrating. Amanda was terrified she would end up being dependent on people for the rest of her life. She hated having her mother cutting up her food and feeding her. She found it undignified that her father had to help her to get washed and dressed. "I woke up one morning and thought 'I've got my whole life ahead of me and I have to beat this'," she says.

It took six months of a gruelling schedule of speech therapy, physiotherapy and counselling before Amanda was fit enough to leave the rehab centre. She is grateful for her time there. "We now know that early rehab is vital for young stroke patients. If you are looked after in a stroke unit by experts, you will tend to do better than if you are looked after on a general ward," says Dr Bath.

Today Amanda is the regional development officer for Different Strokes. She also occasionally runs the helpline. "Young people who call in are genuinely impressed that they are speaking to someone who has had a stroke," she says. The commonest calls are about sex.

"It's a big concern for young stroke survivors. Many lose their partners because they can't cope," she says. "Some men are unable to maintain an erection because of their medication. For some, self-esteem is simply at rock bottom. After my stroke a lot of friends deserted me because they couldn't deal with my disability."

Almost everyone Amanda knows worries about having a second stroke. She takes aspirin every day, and probably will do for the rest of her life as a prevention against blood clots. Warfarin is a stronger drug which is given to stroke patients who have had a bleed in or around the brain. "You can't think about it too much or it will rule your life," she says.

But although she believes she is more cynical these days, she looks wistful when she speaks about the future. Last year she met her partner through the group and they now live together in north London.

"I think about having kids but I'm not sure whether I will be able to. I'm not bitter about what has happened but my priorities have changed. I don't waste time on things and I'm much more upfront with people. My advice to anyone who has a stroke when they are young is all about attitude. You have to want to get back up on your feet and get on with your life."

The Stroke Association's Young Stroke Conference is on 11-12 May in Blackpool (0171 566 0300 for details). Different Strokes: 0845 303 3100.

THE MEDICAL FACTS

5 A stroke occurs when the blood supply to the brain is disrupted. Around 85 per cent of strokes happen when an artery carrying blood to the brain becomes blocked. A small percentage is caused by bleeding in or around the brain.

5 About one-third are fatal and another third cause long-term disability. Most common after-effects: paralysis on one side of the body, altered sensation, speech problems; occasionally there are visual problems.

5 Although most strokes come out of the blue, some people get warning signs including transient ischaemic attacks (a reduction of blood supply). These mini-strokes sometimes occur before a big stroke. Some are not sudden at all but progress over a few hours.

5 New clot-busting drugs may be given a licence later this year. Alteplase has recently been in the limelight; it must be given within three hours of the stroke and restores blood flow to the area of the brain which has been damaged by the clot. Specialist stroke units reduce the chances of dying or remaining disabled.

5 If you have a stroke, dial 999. It is vital to have a CT scan as soon as possible to establish whether it is a bleed or a blood clot. Everything afterwards depends on that knowledge.

5 Once you have had a stroke you are at risk of another. You may need to control your blood pressure, lose weight, keep your cholesterol levels down and certainly stop smoking as well as take medication.