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PRESENTING: JUST THE FACTS Factual Answers to the Public's Most Frequently Asked Questions Piecing together answers to puzzling questions about MS 1. What is multiple sclerosis? Multiple sclerosis (MS) is a chronic, often disabling disease that randomly attacks the central nervous system (brain and spinal cord). The progress, severity and specific symptoms of the disease cannot be predicted; symptoms may range from tingling and numbness to paralysis and blindness. MS is a devastating disease because people live with its unpredictable physical and emotional effects for the rest of their lives. 2. Who gets MS? Twice as many women as men have MS, with the onset of symptoms occurring most often between the ages of 20 and 40. Studies indicate that genetic factors may make certain individuals more susceptible to the disease, but there is no evidence that MS is directly inherited. It occurs more commonly among Caucasians, especially those of northern European ancestry, but people of African, Asian and Hispanic backgrounds are not immune. 3. How many people have multiple sclerosis? There are approximately one third of a million Americans with MS, and every week about 200 people are diagnosed with the disease - more than one person an hour. 4. What are the typical symptoms of MS? Symptoms of MS are unpredictable and vary greatly from person to person and from time to time in the same person. They may include: abnormal fatigue, impaired vision, loss of balance and muscle coordination, slurred speech, tremors, stiffness, bladder and bowel problems, difficulty walking, short-term memory loss, mood swings and, in severe cases, partial or complete paralysis. 5. What causes these symptoms? Symptoms result when inflammation and breakdown occur in myelin, the protective insulation surrounding the nerve fibers of the central nervous system (brain and spinal cord). Myelin is destroyed and replaced by scars of hardened "sclerotic" patches of tissue. Such lesions are called "plaques," and appear in "multiple" places within the central nervous system. This can be compared to a loss of insulating material around an electrical wire, which interferes with the transmission of signals. 6. Is MS fatal? No. MS is not a fatal disease. People who have MS can be expected to have a normal or near-normal life expectancy. With modern medicine and technology, they can live 90-95 % of the normal life span. 7. Does MS always cause paralysis? No. The majority of people with MS do not become severely disabled. Two-thirds of people who have MS remain able to walk with or without an aid. 8. Is MS contagious? No. MS is neither contagious nor directly inherited, although studies indicate that genetic factors may make certain individuals more susceptible to the disease. 9. Can MS be cured? Not yet. However, advances in treating and understanding MS are achieved daily and research to find a cure is very encouraging. Many therapeutic and technological advances are helping people lead more productive lives. There are three approved medications that have actually been shown to affect the underlying disease course. 10. What medications and treatments are available for MS? Since 1993 three medications (Betaseronâ, Copaxoneâ and Avonexâ) have been approved by the Food and Drug Administration for relapsing forms of MS. They have helped to lessen the frequency and severity of MS attacks, reduce the accumulation of lesions in the brain, and one has also been shown to slow the progression of disability. In addition to these medications, there is a wide range of therapies available to treat symptom such as spasticity, pain, fatigue and weakness. People should consult with a knowledgeable physician to develop the most comprehensive approach to managing their MS. 11. Why is MS so difficult to diagnose? The peculiar nature of MS makes the diagnostic process complex. Elusive symptoms that come and go might indicate any number of possible disorders. Some people have symptoms that are very difficult for physicians to interpret, and these people must "wait and see". While no single laboratory test is yet available to prove or rule out MS, magnetic resonance imaging (MRI) has greatly aided in definitive diagnosis. Our Mission: To end the devastating effects of multiple sclerosis 1. What does the National Multiple Sclerosis Society do to help people with MS and their families? Mission Statement: The National Multiple Sclerosis Society's mission is to end the devastating effects of MS. Through its fifty-state network of chapters, the Society funds research, furthers education, advocates and provides a variety of empowering programs for the third of a million Americans who have MS and their families. All people need to do is pick up the phone and call 1-800-FIGHT MS, 24-hours-a-day. How we fulfill our mission: The Society: Helps keep families together despite the strain of dealing with chronic illness Helps people with MS get and keep jobs Provides accurate and up-to-date information about MS Gives free counseling Runs self-help groups Advocates for people with disabilities Refers people to medical professionals with expertise in the disease And, in every way encourages empowerment These things mean the difference between living a full and active life and just existing for thousands of people with MS. Life Situations: We're very confused. My wife was just diagnosed with MS and we have many unanswered questions. I’m so depressed. I’m at home with a newborn baby and I just had an exacerbation. My MS has worsened and I’m finding it increasingly difficult to get around the office. I am unable to see an appropriate specialist quickly in my managed care health group. I can’t cross the street in my office neighborhood because there are no curb cuts. My mother seems to be having some memory problems and I’m afraid that she is going to get worse. Help! My scooter is being repaired and I have no way of getting around until it’s fixed! I can’t get out to the store to do my food shopping. I am so tired and my husband doesn’t understand that I’m fighting fatigue. He wonders why I don’t try harder. I want to start an exercise program but I'm not sure what to do or what not to do. I want to keep up-to-date on advances in MS research. My Dad is in a wheelchair and all the kids at my school think he’s so different. I am in search of a good yet understanding neurologist for my husband. Sometimes I feel very alone and would like to talk to other people who have MS. My mother's MS is progressing and she refuses to move into our home. What do we do to make her home accessible? What the MS Society Offers: Accurate information and a variety of empowering programs for people who are newly diagnosed and their families Physician referrals, phone groups, peer counseling Information about rights in the workplace, work site consultations and support of the guidelines set forth in the Americans with Disabilities Act (ADA) Organized volunteer advocacy groups working with state and federal legislators to achieve quality standards of health care Volunteers working to secure accessibility in their communities Facts and reassuring information, counseling and phone sessions Equipment loans or equipment assistance programs Volunteers helping with immediate needs, referral to community services for short-and long-term assistance Education about MS and referrals to family counselors and community resources; many chapters provide family programs Referral to medical and healthcare resources; some chapters have video lending libraries, physical activity programs including aquatics and exercise classes Chapter newsletters, INSIDE MS, educational programs, an annual national teleconference and the Society home page and 800 information line Family programs that offering education and fun; some chapters have special programs for children and teens, including children's art programs such as "MS Through the Eyes of a Child"; disability awareness programs, counseling and recreation are offered as well Physician referral and information about MS centers and clinics The MS Society has over 2,000 self-help groups nationwide Referral to community resources for personal care and home modification service 2. What is special about the National Multiple Sclerosis Society? The National Multiple Sclerosis Society supports more MS research and serves more people with MS than any national voluntary MS organization in the world. The National Multiple Sclerosis Society is the only national voluntary MS organization that meets the standards of ALL major agencies that rate not-for-profit groups. 3. How many people does the Society serve? Through the Society's fifty-state network of chapters, assistance is provided to over a million people annually. 4. How many volunteers does the National Multiple Sclerosis Society have, and how many people are members of the Society? Across the country, the Society has 2,700 volunteer leaders and over a million more volunteers to carry out its mission to end the devastating effects of MS. The Society has over 600,000 general members. 5. Are the MS Society's programs free? Free or nominal-fee programs for people with MS are available across the country. In every state a variety of free counseling, self-help groups, help with medical equipment, information about MS and referral to professionals specializing in MS are available to people with MS, their loved ones and the public. The Society publishes more than 30 fact sheets and booklets on aspects of living with MS and a lively national magazine, INSIDE MS. The National Multiple Sclerosis Society has the largest MS library in the world and people can get information from it 24-hours-a-day, toll free by calling 1-800-FIGHT MS. Our email and World Wide Web addresses are info@ nmss.org and http://www.nmss.org. 6. Where does the money come from? Where does the Society get its money? The Society depends on voluntary support from members, friends, staff and the public at large -- to end the devastating effects of MS. The Society’s revenue is a combination of private donations, membership dues and contributions, legacies and bequests, and fund-raising events. The National Multiple Sclerosis Society’s nationwide network of chapters is the lifeblood of MS research, providing the support for research programs. Of the 40% of unrestricted income National Multiple Sclerosis Society chapters share with the national office, half goes toward MS research and medical programs. How does the Society raise funds? National MS Society chapters offer a diverse and interesting variety of special events from golf outings to skiing and regattas. The three top fund-raising events for the National Multiple Sclerosis Society are the MS Bike Tour, the MS Walk, and the Society's Annual Campaign. MS Bike Tour: The Society’s MS 150 Bike Tours and one-day cycling events are the country’s largest organized cycling series. Whether you are an avid or occasional cyclist, you can choose a ride that’s just right for you. There are 150 bike rides offered coast to coast from April through November. Proceeds benefit the Society’s national research programs and fund local programs that help people with MS and their families to cope with the devastating effects of MS. MS Walk: Every spring people at over 600 sites across the country participate in The MS Walk. Since its inception in 1989, The MS Walk has become the country’s fastest growing walkathon. Funds raised support the National MS Society’s research and services programs. Annual Campaign: The National Multiple Sclerosis Society's Annual Campaign generates revenue annually for general operation of the Society. Annual Campaign funds are raised through gifts, grants, tributes and memorials, community appeal and workplace giving. Annual Campaign money is not generated through and/or from special events. 7. Where does the money go? How does the National Multiple Sclerosis Society spend its money? Approximately 74% of Society income is devoted to research, member and local chapter service programs that help people with MS and their families to cope, and professional education; 26% is invested in support services such as fund-raising and Society management. Sixty cents on each dollar stays in the community where it was raised. What do donations to the MS Society mean to you? The National Multiple Sclerosis Society spends more money on MS research than any national voluntary health agency in the world. In 1997 the Society is invested more than $17 million to support over 200 research projects around the world. Since its founding, the Society has invested over $221 million in MS research. This investment is paying off in significant advancements in finding a cure and effective treatments, and in better diagnosis, rehabilitation and symptomatic therapy for people with all forms of MS. The Society helps keep families together despite the strain of dealing with chronic illness, helps people with MS get and keep jobs, provides accurate and up-to-date information about MS, gives free counseling, runs self-help groups, advocates for people with disabilities, refers people to medical professionals with expertise in the disease, and in every way encourages empowerment. These things mean the difference between living a full and active life, and just existing, for thousands of people with MS. A Publication of the Communications Department, 8/97 For free information about MS, call 1-800-FIGHT MS 24-hours-a-day, or write to us at the National MS Society, 733 Third Avenue, New York, N.Y. 10017. |
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