Among the many mysteries surrounding multiple sclerosis is the fact that people in certain geographical locations are more likely to be affected by the condition. There is a higher incidence of MS in the north-west than in any other part of the State, and this region, together with Northern Ireland and Scotland, has the highest incidence rates in Europe.
A conference organised by the north-west regional office of the Multiple Sclerosis Society, which takes place in Bundoran this weekend, is expected to attract more than 300 delegates and will be addressed by international experts. Over recent years it has grown to be one of the biggest conferences of its kind in Europe.
Ms Josephine Tinneny, regional worker with the MS Society, said that despite the fact that there was a higher incidence in the north-west, people with MS in the area were not as well served by the health services as in other regions, because there was no neurologist employed by the North Western Health Board.
The result is that people from the remotest parts of north and west Donegal have to make the gruelling trip to Dublin for tests and scans. "This subjects people to a lot of extra stress. There is nowhere else in the country where people have to travel these distances to see a neurologist."
Another issue raised by the north-west regional office is that no epidemiological research has been carried out to look for possible reasons why the incidence rates are higher in the three counties of Donegal, Sligo and Leitrim than elsewhere in the Republic.
The incidence rate in the State is 1 in 800 or 138 per 100,000 of the population, but in the northwest the rate is 1 in 600. There are now 250 people diagnosed with MS on the society's regional database, and over the past six months, five more people have registered each month. Not everybody with the condition chooses to register. Women are three times more likely to develop the condition than men, and in total about 4,000 people in Ireland have MS.
Ms Tinneny said it was hoped that steps would soon be taken to address the lack of epidemiological research in the region. One of the speakers at this weekend's conference is Dr Stanley Hawkins, the senior consultant neurologist at the Royal Victoria Hospital, Belfast, and the society is now in discussions with him about doing research in the north-west.
One of the aims of the society is to increase awareness among the general public of MS. A disease of the central nervous system, it interferes with the brain's ability to control such functions as seeing, walking and talking. It is called sclerosis because it involves "sclerosed" or hardened tissue in damaged areas of the brain and spinal cord.
People aged between 20 and 40 are most likely to get MS and symptoms can be mild or severe. They can also come and go unpredictably. Most people go through long periods of remission after attacks which can last days, weeks or months. It does not affect life expectancy, and the society stresses that it is not a mental illness, not contagious, and at the moment is not preventable or curable.
MS Society literature points out that most people lead active lives despite intermittent relapses and are able to adopt a positive approach. Mr John McGinty, a project worker at the society's Letterkenny-based regional office, says that having MS has given him a greater understanding of what life is all about.
"I am happy now that I learned a lot about life that I wouldn't have learned otherwise. If I never had it I would have missed out on a lot of understanding of life and how people live," he says.
Now aged 51, he first started experiencing symptoms in 1982 but it was three years before he was diagnosed as having MS. These three years, he says, were the worst because of the uncertainty. At one stage, he was treated for TB. He also worried that he could have had a brain tumour.
"I was wasting away with worry. In fact, when I was told I had MS it was a relief because I was able to put a name on it, I could ask questions about it and knew where to go for help."
When he was diagnosed, John was self-employed in a family business. He was also the father of three children. He decided to give up the business he was running, and now works full-time with the MS Society. But being diagnosed with the condition did not stop him and his wife from having two more children.
After initial periods where he was confined to bed and could not walk, he went into remission. Then again nine years ago, he had another attack and couldn't walk for a time. After each attack, he says, you never quite get back to what you were before, although he now leads a normal life.
He does have problems with his eyesight, and at times gets "reminders", when he loses his balance or feels weakness in his limbs. Such symptoms he can live with.
"Getting MS is not the end of the world. There may be changes to the way you live, but people adapt. We emphasise the abilities people have, rather than the disability. Often it makes people realise that they have abilities they never used before," he says.
At the MS Society's regional office in Letterkenny, workshops and information evenings are held regularly, and various training courses are run. Nine people have received Queen's University certificates in counselling, while another 16 have qualified in facilitation. A FAS Community Employment Programme is run at the office and of 15 participants, 13 have MS. Their main work is in providing a visiting service, increasing public awareness and in organising workshops.
John McGinty says he would like everybody who has MS, particularly those who are newly diagnosed, to use the office, as it is very important to talk to others who have the condition. This weekend's conference, he says, will also be a social occasion as well as an opportunity to hear leading international experts outline the latest research on MS and how symptoms can be managed. There will also be a range of workshops.
The conference takes place in the Great Northern Hotel in Bundoran tomorrow and Sunday, with registration this afternoon. The MS Society regional office in Letterkenny can be contacted on 074 - 25017, or e-mail: msinwregof@eircom.ie.