SHIRLEY GRIFFITH: This is SCIENCE IN THE NEWS, in VOA Special English. I'm Shirley Griffith.
BOB DOUGHTY: And I'm Bob Doughty. Today, we continue our report about multiple sclerosis. America's Food and Drug Administration says multiple sclerosis affects about four hundred thousand people in the United States. More than two million others worldwide are believed to have the disease, which is often called MS.
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SHIRLEY GRIFFITH: There are four main kinds of multiple sclerosis. The most common is called Relapsing-Remitting. About eighty- to eighty-five percent of MS patients begin with this form of the disease. More than half of them have Relapsing-Remitting MS at any one time. These patients have one or two major MS-related health problems every one to three years. Then they have periods with no signs of the disease.
The problems appear suddenly and last a few weeks or months before slowly disappearing. They may include lack of balance, low energy levels, trouble with speaking clearly and even blindness. Steroid treatments can speed the recovery from this kind of attack. However, these symptoms may become worse each time they appear.
Last week, we met thirty-five year old Amy Jo Rowell. Doctors found four years ago that she had Relapsing-Remitting MS. She told VOA she is not getting better. But she is not getting worse either.
AMY JO ROWELL: "I'm operating on a plateau. Every once in a while I may have what's called an ‘exacerbation,' where my symptoms may become worse in one particular area or another. After a period of time they usually recover, stabilize, sometimes with some permanent damage. I do have some things that are permanent – um, loss of feeling, um, and that sort of thing and some weakness and some coordination. Every once in a while my speech is interrupted or affected. Um, I've been really lucky for the most part. I do have – I don't want to say a recovery because that gives a false sense of, of what is actually happening – but it does stabilize again. And it's just kind of periods of ups and downs, mostly flat."
BOB DOUGHTY: The second kind of multiple sclerosis is called Primary Progressive. In this form, the symptoms appear and begin to grow worse, with no periods of disappearance. About ten percent of patients begin their struggle with the disease this way.
The third kind of MS is called Secondary Progressive. This form of the disease affects about fifty percent of those with the Relapsing-Remitting form of MS. It often begins to affect them within ten years of receiving their first medical diagnosis of Relapsing-Remitting MS. When the disease changes to Secondary Progressive, the disease begins to grow worse.
The fourth kind of MS is called Progressive Relapsing. It is the most severe form of multiple sclerosis. New signs of MS appear while existing ones grow worse. Luckily, this form of the disease is rare.
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SHIRLEY GRIFFITH: Scientists say multiple sclerosis is not directly passed from parents to children. Yet it has been shown to strike members of the same family. The National Multiple Sclerosis Society says one in every seven hundred fifty Americans is at risk of developing MS. But the risk rises to one in every forty people among those who have a close family member with the disease.
It does not appear that one gene is responsible for MS. Instead, many genes may increase the possibility that a person will develop MS.
There is no cure for multiple sclerosis. But it does not always cause severe disability. Many people with MS are able to live normal lives. For example, Amy Jo Rowell continues to operate a busy animal shelter in the state of Wisconsin.
BOB DOUGHTY: The National Institute of Neurological Disorders and Stroke says some people with MS do well with no treatment at all. Many treatments have serious side effects and some carry risks. Yet research has suggested that the best way to reduce future disease activity is to begin MS therapy as early as possible. Medical experts say early, pro-active treatment is the best defense against permanent damage to the nervous system.
In the United States, doctors usually suggest treatment with one of eight disease-modifying therapies approved by the Food and Drug Administration. All of these treatments have been shown to reduce the number and severity of MS attacks and appear to slow the progress of the disease.
Early last year, the FDA approved dalfampridine extended-release tablets to help MS patients with walking. This is the first MS-specific treatment developed for symptom management. Dalfampridine is sold under the name Ampyra. FDA officials say the drug has side effects and can cause seizures if taken at higher than suggested levels.
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SHIRLEY GRIFFITH: Scientists are working to develop other medicines and treatments for MS. The National Multiple Sclerosis Society says many studies are continuing around the world. Doctors hope that new therapies will help more people with multiple sclerosis, especially those with progressive forms of the disease.
Timothy Coetzee is the Chief Research Officer for the National Multiple Sclerosis Society. He told VOA that he believes developments in the past few years mean researchers are close to learning what causes MS.
TIMOTHY COETZEE: "With the advent of technology and genetics and the ability to mine massive quantities of information and also to engage hundreds of thousands of people in the movement, I think we will see new lines of research that will help us identify what is at the cause."
SHIRLEY GRIFFITH: However, a recent study offered little good news for people with MS. Results of the study were reported in the journal Neurology in July. Researchers examined information about more than eight hundred people who had been recently diagnosed with MS. The report predicted lost productivity over a ten-year period.
BOB DOUGHTY: The report also estimated health care costs for MS patients, including the cost of drugs that were developed in the nineteen nineties. At the time, these drugs were found to have the ability to affect the development of the disease instead of treating the symptoms.
The study showed the drugs have provided some help to MS patients. The drugs were found to slow the progression of the disease and reduce future attacks. But they have side effects, and cost as much as thirty thousand dollars a year.
The study found the cost of the drugs is eight times higher than health policy experts believe is reasonable, when comparing their effect on patients. The experts say for drugs to be cost-effective, they should produce one additional quality year of life for every one hundred thousand dollars in cost. The MS drugs studied cost more than eight hundred thousand dollars for every quality year of life produced.
The study organizers say the comparison would be much better if the drug costs were lower. They say the cost of the drugs in Britain, Canada and Germany is sixty-seven percent lower than in the United States.
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SHIRLEY GRIFFITH: Even with no cure for multiple sclerosis, researchers are developing a better understanding of the disease. This is leading to better treatments and a better quality of life for those who live with it.
The National Multiple Sclerosis Society's Doctor Coetzee tells VOA that he is hopeful about the fight against MS. He notes that researchers around the world are taking part in the effort.
TIMOTHY COETZEE: "We're reaching a point in science and medicine where the intersection of diseases and strategies is, I think, more apparent and more viable than it ever was in the past. There isn't a continent in which people aren't working on MS. And I think that that is for me part of why, why we're also part of this global movement, ah, to do something about this disease."
SHIRLEY GRIFFITH: The National Multiple Sclerosis Society continues to support holistic research. The Society wants to undo the damage MS has done and, someday, end the threat of the disease forever.
The group has created a website that tells about progress in the fight against multiple sclerosis. The website has the latest news on research and treatments for MS. And it has information about help available to people with the disease, their families and their doctors.
BOB DOUGHTY: Living with multiple sclerosis is never easy. Just ask Patrick Finney of Grapevine, Texas. He first had trouble walking more than ten years ago. Doctors later said he had MS.
Mister Finney was urged to take his medicine and rest. But he had other ideas. He slowly retrained himself how to walk. In time, he took up running and even started to compete in races.
SHIRLEY GRIFFITH: The story of Patrick Finney is very unusual for someone with MS. Last month, he crossed the finish line at the Bellingham Bay Marathon in the state of Washington. Strong winds made running difficult during the forty-two kilometer long race. By finishing, he reached his goal of completing fifty marathons in all fifty American states.
Mister Finney thanked all his friends and family members who traveled to Bellingham to watch him compete. As he told the Reuters news agency, it has been "an amazing journey, and I'm on top of the world."
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BOB DOUGHTY: This SCIENCE IN THE NEWS program was written by Christopher Cruise. June Simms was our producer. I'm Bob Doughty.