MS patients 'can live life to the full'

Thanks to medical advances, being diagnosed with a disease like multiple sclerosis does not mean that the patient cannot live a normal life, sufferers stressed during a seminar held in Malta last week.

Three patients - a Canadian, a Dutch and a Czech - spoke about their experiences in dealing with the disease and how they are managing to live their life to the full.

Multiple sclerosis (MS) is a chronic and unpredictable disease of the central nervous system. Symptoms, which vary from person to person, take place when the body's immune system attacks and destroys the protective insulation surrounding the central nervous system's nerve fibres, with the damage interfering with nerve communication.

Although there is no cure for multiple sclerosis, treatments help lessen the effect of the symptoms and reduce the frequency of relapses. In Malta, there are over 100 sufferers, according to the Multiple Sclerosis Society of Malta.

Neurology Professor Randall T. Schapiro, who has been working with sufferers of MS for more than 30 years, said the disease was a very significant one because it affected young people at the prime of their life.

"It affects people when they are somewhere between 20 and 40 years old. When disability hits at this age, it not only affects the individual but also his family, workmates and relationships," he told The Times.

Prof. Schapiro stressed the importance of taking medication to change the course of multiple sclerosis, even though this might not be easy.

Prof. Schapiro, who founded one of the first comprehensive MS centres in the United States in 1977, said one of the controversies surrounding the treatment of MS was when to start the medication.

"Does medication have to start the minute the diagnosis is made, or can you afford to wait and see how the disease will progress before starting? The problem is that you don't see and feel all the damage that the disease is doing to the body, sometimes until it's too late," he said.

He stressed that it was really important for patients to speak to professionals to have a clear knowledge about the medication and its effects.

"One of the reasons why people stop using medicines is their lack of understanding as to what they are taking them for. Someone who has been put on medication, and feels worse than they did before, is prone to stop taking it," he said.

Asked about the disease's genetic aspect, Prof. Schiapiro said this existed but had not yet been determined.

Speaking during last week's seminar, which preceded a one-day symposium for neurologists from all over Europe organised by pharmaceutical company Schering, Fred Steinhaus who was diagnosed in 1987 at the age of 24, spoke about his rapid physical and mental health deterioration due to multiple sclerosis. He started feeling the symptoms of multiple sclerosis during his sister's wedding.

"That was the start of a downward trend in my health," he said, adding that he got worse over a two-year period.

Mr Steinhaus said at the time the only therapy for the condition was taking steroids, which lessened the symptoms. However, he still felt poorly - and felt very bad when he was unable to hold his daughter Christina during her baptism.

The 42-year-old Canadian took part in a trial for a new multiple sclerosis drug, which started more than 18 years ago.

"Injecting the medication has become a normal part of my life; something I do it as easily as brushing my teeth," he said.

Mr Steinhaus said his life has since changed in many ways, and one of the highlights of his recovery was when he could be trusted to be left alone with his daughter.

Dana Komínková, from the Czech Republic, was diagnosed with multiple sclerosis 11 years ago, at the age of 22. She was the first of two siblings to contract the disease, with her older brother being diagnosed a few years later.

"At first I was in shock and afraid of what would happen. I was also angry, asking why it had happened to me," she said.

Dr Komínková spoke about how she had to change her lifestyle around the disease, and the need to accept that in the future she might need help. However, she stressed, there was no reason why a sufferer should stop doing things, and stop living life to the full. As an assistant professor at the Czech Technical University in Prague, Dr Komínková works 10-hour days, and still goes hiking with healthy people.

Dutch patient Wendy Verbruggen was studying occupational therapy when her symptoms started at the age of 19.

"I knew that something was wrong with me, and went to the doctor immediately, which led to a quick diagnosis," she said.

Although initially she did not want to accept the medication because this included very frequent injections, she asked for it herself the next time she got her symptoms.

"Just because I have multiple sclerosis doesn't mean I want to be treated any differently from other people," she said.

Ms Komínková said that for the 10 years she has been living with the condition, she has learned to know her body's limitations, even though she admitted overstepping them sometimes.

"There is always sunshine after rain and life isn't over just because you have multiple sclerosis," she said.

The psychological impact of MS on the sufferer's relatives was outlined by child and adolescent psychiatrist Barbara Stern, who said coping with the condition required a supporting relationship and a meaningful dialogue.

Children's coping with a parent suffering from MS depends on a number of factors. It is also influenced by the coping capacity of the ill parent and even more by the coping ability of the healthy parent.

Dr Stern said children often wanted information about their parent's condition but were afraid of asking questions for fear of hurting their ill parent. According to Dr Stern, children need age-specific and individual information about the disease, so that they do not fantasise about it or feel that they brought it about themselves because of their naughty behaviour.

She said children's fantasies of the disease, if this is kept secret, were much more disastrous and added that acknowledging the effect of the parent's illness on a child was crucial to reducing the negative impact of the disease.