IMAGINE A WORLD FREE OF MS — Interview With Cyndi Zagieboylo, President of the National MS SOciety

By Brad Prescott, Caring.com senior editor

Last updated: March 21, 2013

Multiple sclerosis is a chronic disease of the central nervous system that is thought to be an autoimmune disorder. MS can cause a wide range of problems, ranging from blurred vision and loss of balance to paralysis and blindness. It’s most commonly diagnosed in people between the ages of 20 and 50 and affects more than 2 million people worldwide. Cyndi Zagieboylo is the president and CEO of the National Multiple Sclerosis Society.

Tell us about the National MS Society.

Cyndi Zagieboylo: The National MS Society addresses the challenges of each person affected by MS. To fulfill this mission, the Society funds cutting-edge research, drives change through advocacy, facilitates professional education, collaborates with MS organizations around the world, and provides programs and services designed to help people with MS and their families move forward with their lives. In 2012 alone, the Society invested $43 million to support 350 research projects around the world while providing programs and services that assisted more than one million people. The Society is dedicated to achieving a world free of MS.

Are there any particular warning signs for MS that should prompt people to consult their doctors?

CZ: Multiple sclerosis is a chronic, unpredictable disease that affects the central nervous system (the brain, optic nerves, and spinal cord). It is thought to be a disease of the immune system, in which the immune system mistakenly attacks healthy tissue in the central nervous system.

MS can cause blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, blindness, and more. These problems may be permanent or may come and go. Symptoms of MS are unpredictable; they can vary from person to person, and from time to time in the same person. For example: One person may experience abnormal fatigue and episodes of numbness and tingling. Another could have loss of balance and muscle coordination, making walking difficult. Still another could have slurred speech, cognitive issues, tremors, stiffness, and bladder problems.

There is significant and growing evidence that early diagnosis and active treatment can help slow disease progression and delay the onset of these and other symptoms. MS symptoms result when the immune system attacks myelin, the protective insulation surrounding nerve fibers of the central nervous system. Myelin is often compared to insulating material around an electrical wire; loss of myelin interferes with the transmission of nerve signals, which, in turn, causes the symptoms of MS. Myelin is destroyed and replaced by scars of hardened “sclerotic” tissue. Some underlying nerve fibers are permanently damaged or severed as well. The damage appears in multiple places within the central nervous system, giving the disease its name.

What are the biggest misconceptions regarding MS?

The most common misconceptions are that there is nothing to be done about multiple sclerosis and that everyone’s experience is the same.

With early diagnosis and treatment, many people living with MS can have a normal or near-normal life expectancy, and most do not become severely physically disabled. Two-thirds of people living with MS remain able to walk, though many will need an aid, such as a cane or crutches, and some will use a scooter or wheelchair because of fatigue, weakness, balance problems, or to help conserve energy.

MS is not contagious and is not directly inherited. Studies do indicate that genetic factors, in combination with environmental factors, make certain individuals susceptible to the disease and likely help determine the disease course and severity of the illness.

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