SHE may be an internationally renowned author
with a fortune to rival Madonna's but according to J K Rowling, it is not the financial rewards of success that have given her the most satisfaction since she shot to fame as the creator of Harry Potter. It is something far more personal. ''For me, being able to campaign and fund-raise for multiple sclerosis is the most personally meaningful thing to have come out of being famous,'' she says. ''It would mean everything to me if I thought even one person did not have to go through what my mother did.''
In the two years since Rowling became patron of the Multiple Sclerosis Society Scotland, she has foregone her well-guarded privacy to campaign and fund-raise on its behalf, driven on by the memory of her mother, Anne, who died of res-piratory failure linked to MS when she was 45. Looking back now on her first two years as a campaigner, Rowling reveals that the personal thanks of MS sufferers and their families has meant a huge amount to her. ''The biggest feedback I've got is from letters and people coming up to me in the street - people who have MS themselves or those with friends and relatives with MS - saying how happy they are to see the subject getting some media coverage,'' she says.
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A Hallowe'en Ball she hosted at Stirling Castle the weekend before the launch of Harry Potter and the Chamber of Secrets raised (pounds) 275,000, smashing the target of (pounds) 100,000. ''I can't tell you how happy that made me; I was still beaming about it at the film premiere two days later. We got enough money on that one night to double the number of MS nurses in Scotland, though we still need the commitment of health boards and the Scottish Executive.''
Talking exclusively to The Herald as a (pounds) 500,000 MS research group, largely funded by Rowling, is launched in Aberdeen, the author says she is not just hopeful that a cure will be found - she is positive. The question is when. But she condemns the Scottish Executive's failure to fund research into the disease or draw up national guidelines on care standards, even though Scotland has the highest per capita incidence of MS in the world.
She knows how it feels to watch a desperately loved relative suffer for lack of better care and treatment. Her mother, whom she has described as an energetic, youthful figure with a contagious laugh, a keen gardener who swam, played badminton, and walked the dog for miles, started having trouble lifting the teapot when the young Joanne was just 12. Anne put the pins'n'needles feeling she experienced down to a touch of rheumatism or a trapped nerve. But within two years it had spread up her arm and across her chest. At the age of 35, she was told she had multiple sclerosis, a neurological condition in which the body's immune system malfunctions and starts attacking the brain and the spinal chord.
She remained ''relentlessly cheerful'' when anyone asked her about her health but when she was
just over 40 she started using a wheelchair outside the house and, at 42, was using a walking frame inside it. Rowling last saw her just before Christmas 1990 and on New Year's Eve, she died.
Rowling, 37, who has a nine-year-old daughter, Jessica, and is pregnant with her second child, deeply regrets that her mother did not have the help of specialist carers, such as nurses and physiotherapists, who could have helped her to overcome the isolation that increased as her mobility diminished. ''Physiotherapy helped her physically when she received it, though we never seemed able to establish on-going care. People came and went; she was living in a rural area - just as so many people with MS are in Scotland,'' she says.
''I saw my mother's health decline steadily from the age of 35 until her death at 45. The care was intermittent and inadequate and she never came into sight of a specialist MS nurse. Nobody should have to suffer that lack of care or isolation in a rich, western country.''
Although no-one knows yet what causes MS, researchers believe genes may play a part. For Rowling, that worry does surface sometimes. ''I was told when I was about 18 that there was a 'familial tendency' by a doctor I saw at university,'' she says. ''I understood that to mean that I'm a bit more likely to get MS than the next person, though a lot of people are
the only ones in their family with
MS and there seems to be no hereditary link at all. The only time I've ever been scared was last year when I hurt my back and my legs went numb for a while. It turned out that
I was being paranoid, but it did
bring back a lot of memories of my mother's first symptoms.''
Rowling did not lack information about the condition when her
mother was diagnosed because, like her mother, her reaction was to try to read as much as she could about it. She praises the MS Society Scotland (''I've never met so many dedicated people packed into such a small place'') which, for some Scottish MS sufferers, is the only source of information and support.
Informing the wider public about the disease is not so easy but TV can help. In the Emmy award-winning drama The West Wing, President Jed Bartlett, played by Martin Sheen, has MS and manages to keep it quiet for years. Rowling is pleased that the disease features in the programme, not least because she and her family are ''obsessed'' by it. ''Sometimes we have to remind ourselves that Jed Bartlett is fictional, so as to stop ourselves writing him fan mail,'' she says. The more ardent among her Harry Potter fans will recognise the sentiment.
She points out that the fictional President Bartlett does not have a very severe form of MS, but, even so, agrees it is ''very useful'' to see a character living with the condition. It has not always been so sensitively portrayed. ''I will never forget watching an episode of Fame with my mother when I was about 15 - she had just been diagnosed. A beautiful young dancer popped up in this particular episode and the curly-haired keyboard player character, whose name escapes me, fell in love with her. The dancer became progressively more ill and was diagnosed with MS in the space of about 20 minutes. And I remember my mother saying tearfully 'but does she end up his girlfriend?' Well, of course she didn't - it was Fame - people weren't allowed to be ill in Fame. She never appeared again. So I am all for President Bartlett fighting MS onscreen. I'll bet there are a few people out there who found
out what MS was from The West Wing, which can't be bad.''
While TV may be doing its bit, she is much less impressed with the action, or lack of it, taken over the past three years by the Scottish Executive. Despite of the high incidence of MS in Scotland, where 10,400 people have the disease, many of them between 20 and 40, the Scottish Executive does not fund any research into the condition. Nor, as yet, has the executive set national clinical standards for MS care or assigned a
higher priority to neurological conditions, as has been done in England and Wales.
Rowling says that the lack of progress makes her feel ''perplexed and angry''.
''Perplexed because people with MS will tell you that the standard of care varies greatly depending on the area of Scotland in which you live. Angry - it's obvious why.''
The lack of funding for research is ''deeply disappointing''.
''The Westminster government does fund a small percentage of research into MS, but here in Scotland, nothing - and yet MS is more prevalent in Scotland than in any country in the world.''
There has been one major step forward in the past year. In February, the UK government forged a deal with pharmaceutical companies whereby Beta Interferon would be made available to those who could benefit from it, ending the bane of postcode prescribing. Rowling was delighted when she heard, not least because she felt that the argument against its use - its expense - was fallacious. ''Compare the cost of maintaining somebody's health and mobility - possibly so that they can continue working - with the cost of relegating them to a life-time of state-funded or family care. I've met people with MS whose partners have been forced to give up work to care for them full-time. I would be interested to hear how anyone thinks providing Beta Interferon is a more expensive option than having two people give up their jobs and become state-supported.''
The new group in Aberdeen is
an important development for MS research in Scotland, where work
on the fundamental causes of the
disease is not well-represented.
The team will be headed by the
internationally-renowned MS expert, Dr Chris Linnington, who has worked on MS at the Max Plank Institute for Neurobiology, Martinsried, Germany, for the past 12 years.
Dr Linnington has high hopes for the research group and believes that if developments in research continue at their current rate, there could be important breakthroughs on the horizon.
''I would be surprised if we don't see significant progress in the next 10 years. It may not be a cure, but it may mean we detect it earlier and find treatments that will delay the progress to such an extent that
people may live well into old age.''
Aberdeen's fame as a centre for medical imaging will help the researchers. Using nuclear mag-netic resonance they will be able to see what is happening inside the brains of sufferers. They will also investigate the reasons why the immune system appears to attack the optic nerve first in MS sufferers and to what extent genetic and environmental factors might contribute to causing the disease.
Rowling says she would be happy with any advance the group manages to make. For her part, she will continue campaigning. Given her commitment to awareness-raising, she might be expected to try and write a character with the disease into one of her multimillion-selling Harry Potter novels. Well, it's not quite as simple as that. As Rowling explains: ''One problem with the world of Hogwarts - or not, depending on how you look at it - is that, being wizards, they tend not to have to suffer what the rest of us do. I spent ages working out what magic could and couldn't do with regard to illness and decided that normal human ailments - such as MS - could be cured. It's a bit
harder in the real world, but we're going to see what we can do up