Page 1
Page 2
Page 3
Page 4
Page 5
Page 6
Page 7
Page 8
Page 9
Page 10
This digital version of the Multiple Sclerosis Foundations 2016 National MS Education and Awareness Month Booklet was made possible by a charitable contribution from 2 This publication is a service of the Multiple Sclerosis Foundation a national nonprofit organization. The purpose of this publication is to educate and inform not to provide medical advice. Multiple Sclerosis Foundation National Headquarters 6520 N. Andrews Ave. Fort Lauderdale FL 33309 888-MSFocus 888-673-6287 supportmsfocus.org EVERY HOUR EVERY DAY Statistics indicate that more than 200 people are diagnosed with MS each week approximately one person every hour of the day.Yet unless you or someone you love is personally affected you may know little about it or hold common misconceptions about the illness. Who are the approximately 400000 Americans living with this illness How are they affected What is your risk for MS What can you do to help Read to learn the facts about MS that you need to know. There are estimated to be 350000 to 500000 people in the U.S. who have been diagnosed with MS and more than 2.5 million people living with the disease worldwide. However these numbers are only estimates because the Centers for Disease Control and Prevention does not require U.S. physicians to report new cases of MS and the symptoms of the disease can go unrecognized for some time. QUICK FACTS WHO DOES MS AFFECT MS is more common in women appears more frequently in Caucasians than in Hispanics or African Americans and is relatively rare among Asians and certain other ethnic groups. MS is most commonly diagnosed in individuals between the ages of 20 and 50 although it can develop in young children and teens as well as older adults. 3 What is MS MS affects the central nervous system which is comprised of the brain and spinal cord. In the CNS nerve fibers called axons are protected by a fatty layer of insulation called myelin. Myelin allows nerve signals to travel properly. In MS overactive immune cells cause inflammation which damages the myelin.This results in a loss of myelin called demyelination and some degree of axonal damage. Wherever the myelin is destroyed a damaged area of white matter known as a lesion or plaque will occur. Over time hardened scar tissue develops at the lesion site.This hardened scar tissue or sclerosis may develop at multiple sites throughout the CNS hence the name multiple sclerosis.This scarring disrupts the transmission of nerve signals that communicate a desired action from the brain through the spinal cord to various parts of the body. THEUNPREDICTABLEDISEASE Imagine this you disconnect your cell phone from its charger as you get ready for a busy day. But even though it has been connected all night you notice the battery is only partially charged.You look at the cord and notice a spot where the insulation has been stripped away and the wires inside are exposed. Because the path by which the current travels is damaged not all of the electricity sent from the outlet reached its target your phone. This analogy is helpful in understanding MS. Signals from the brain travel along nerves that are insulated with a substance called myelin. This insulation allows the signal to reach its destination without disruption. In MS the insulation becomes damaged or lost causing the nerve impulses traveling to and from the brain and spinal cord to be interrupted or distorted producing the many symptoms associated with MS. Of course the central nervous system is much more complex than a simple cord and this damage can occur anywhere within it. For that reason MS can cause a plethora of different symptoms ranging from mild to life- threatening. Of the more than 50 recognized symptoms no one can predict which symptoms any one person with MS will experience. Additionally most people are initially diagnosed with the relapsing-remitting form of the disease in which symptoms can come and go. For these reasons it is often said that the only thing predictable about MS is its unpredictability. This makes the condition challenging to diagnose and treat and is especially challenging to live with each day. 4 THE EFFECTS OF MS MS affects each person differently but there are certain typical courses it may follow. Some may have periods of relapse followed by full or partial remission called relapsing-remitting or RRMS where others may have rapid progression of disability from onset called primary progressive or PPMS. Further complicating matters those diagnosed with RRMS may later see their disease course transition experiencing fewer relapses but increasing progression of disability called secondary progressive or SPMS. QUICK FACTS COMMON FIRST SIGNS Because MS can affect any part of the body there are no specific symptoms associated with onset. However some symptoms are more common than others as the first signs of MS. These are Blurred suddenly decreased or double vision Numbness Tingling Loss of balance or coordination Weakness in an arm or leg Heat sensitivity which may trigger the above If you or someone you know experiences these symptoms it is important to discuss them with your healthcare provider. Whatever course of MS a person may be diagnosed with whatever symptoms of the disease they face the effects of MS on their life may be far-reaching. An MS diagnosis also has emotional financial and social ramifications. It may affect a persons ability to pursue a career interfere with education put strain on relationships and even damage a persons self-esteem as a result of stigma. Support is vital for those with MS to maintain the best possible quality of life. What is my risk for MS The risk among the general population for MS is low estimated at 0.1 percent. If you have a parent or sibling who has been diagnosed with MS your risk is elevated to 2.5 percent. A person who has an identical twin diagnosed with MS has a 25 percent risk of developing it. Many with MS worry about the elevated risk for their children. MSF Senior Medical Advisor Ben Thrower M.D. said While your child may have a 2.5 percent risk of developing MS remember that means there is a 97.5 percent chance they will not. 5 MS MYTHS AND REALITIES MYTH MS is a fatal disease. REALITY Most people with MS will have a normal or near-normal life expectancy. They are more likely to die from other causes such as heart disease stroke or cancer than from MS. Death caused directly by MS is highly unusual. However there are variants of MS that can be very aggressive and potentially shorten life. These are not the norm. MS tends to affect quality of life not quantity of life. MYTH There are treatments available that stop MS. REALITY There are a variety of treatments available to slow the progress of MS but as yet there are no treatments that stop MS or reverse the damage it has caused within the central nervous system. MYTH A person diagnosed with MS will require a wheelchair. REALITY While those with progressive MS may require mobility aids sooner studies indicate that 90 percent of patients with minimal disability five years after onset were still ambulatory at 15 years. It is estimated that at 20 years after diagnosis only about one-third of people who receive no treatment may require a wheelchair or other assistive device. With todays treatments to slow the progression of MS an increasing number of individuals remain ambulatory until an advanced age. MYTH You can tell if someone has MS by looking at them. REALITY While some individuals are visibly affected by MS particularly by mobility impairments associated with the disease the majority of symptoms are invisible. Because of this people with MS are often stigmatized by those who do not understand the nature of the condition. Common Symptoms Can Be Life-Altering Fatigue Up to 80 percent of those with MS report fatigue that interferes with their ability to carry out everyday activities. Pain May be caused by sensory problems feeling pins and needles burning or itching muscle spasms or other causes. It is often chronic and difficult to treat. Trouble walking More than half of those with MS will experience changes in walking because of symptoms such as tremor loss of balance or weakness. Other symptoms such as foot drop vertigo and spasticity can also affect walking. Changes in thinking Cognitive changes are one of the most common causes of individuals with MS leaving the workforce. Difficulties with attention concentration short-term memory and information processing are common. 6 HOWWE HELP Multiple sclerosis is the second most costly chronic condition to manage. Each year thousands turn to the MSF for assistance with needs they cannot afford but which cannot be ignored.Thanks to the generosity of our supporters we are able to provide vital services. QUICK FACTS WHAT SERVICES DOES THE MSF PROVIDE FOR THOSE WITH MS Homecare Respite care Physical therapy Speech therapy Occupational therapy Medical equipment Assistive technology Home modifications Vehicle modifications Transportation assistance Prescription copays Support groups Cooling garments Computer equipment Wellness programs Exercise classes Doctors visits Emergency assistance The MSF also provides printed materials education and outreach programs for patients family members and healthcare providers. With national headquarters in Fort Lauderdale Fla. the MSF serves the nation from one centralized location. By eliminating the need for branch offices while networking with independent local grassroots organizations we are able to maintain a cost-effective and efficient operation providing the highest quality of service. All MSF programs are funded through voluntary contributions.There are no fees or charges for any MSF services. Consequently your donation is essential in helping meet daily needs and improve quality of life. What is the MSF The Multiple Sclerosis Foundation is a service- based nonprofit organization established in 1986.The MSF provides a comprehensive approach to helping people with MS maintain their health and well-being. We offer programming and support to keep them self-sufficient and their homes safe. Our resources assist people who have MS their families and caregivers regional support groups and healthcare professionals. Our priority is to serve with empathy resourcefulness and responsibility. All MSF services as well as information literature and subscriptions to our publications are provided free of charge.The MSF respects the privacy of our clients and donors and does not share sell loan or exchange their information with other nonprofit organizations or commercial enterprises. Support services coordinators are available 830 a.m. 7 p.m. EST Monday-Friday. Call Toll-free 888-MSFOCUS 673-6287 7 HOWYOU HELP Each year our programs receive hundreds more applications for assistance than the MSF can fund.Your support helps us to meet the ever growing need for services. Caring people across the nation help by hosting special event fundraisers in their local communities. If you would like to host an event to support those with MS our fundraising specialists can assist you with every aspect of planning. Well provide you with all of the tools to succeed including a personalized donation page on our website. Events can be big or small elegant or casual according to your taste. Consider these examples The Barbeque Planning a backyard bash to kick off summer Turn it into a special event by asking guests to make a small donation at the door. Ask a local business to donate a prize you can raffle off for extra fun and funds. TheWineTasting If you have a taste for the finer things organizing an elegant affair doesnt have to be difficult. Wine sellers and vineyards are interested in promoting their wines. Provide them space to set up tasting tables and sell tickets to wine lovers in your community. The Bowl-a-Thon Are you a member of a bowling league or do you just like to bowl with your kids Sign up your fellow bowlers to participate. Each participant asks friends and family to pledge making a donation for each pin they manage to knock down or a single donation toward the event. Then go have fun bowling The ideas are endless. Host a fundraiser that appeals to you and your guests and the MSF will be there to help. For more information contact The Fund Development Department at 800-225-6495 or eventsmsfocus.org. Your Dollars at Work 20 A one-hour visit from a homecare aide 25 Materials and refreshments for a support group meeting 30 Three weeks of wheelchair exercise classes for one student 60 Cooling accessory package for people whose symptoms are exacerbated by heat exposure 90 A visit to a physical therapist 190 A visit to a neurologist 350 Emergency assistance with rent or utilities for individuals in an MS-related crisis 400 A portable wheelchair ramp to help a person with MS maintain their independence 500 Computer and accessories to connect a homebound person to MS support and resources Visit www.msfocus.org or call 800-225-6495 to make your donation today. The MSF is recoginized by the IRS as a 501c3 organization. Contributions are tax-deductible to the fullest extent allowed by law. NATIONAL HEADQUARTERS 6520 NORTH ANDREWS AVENUE FORT LAUDERDALE FLORIDA 33309 MSFs support services coordinators are available from 830 a.m. to 7 p.m. Eastern time Monday through Friday to help you learn about and navigate available resources. NATIONAL TOLL-FREE HELPLINE 888-673-6287 WEBSITE www.msfocus.org EMAIL supportmsfocus.org ADMINISTRATION 800-225-6495 Funding for this booklet was made possible in part by grants from the following companies THE MSF IS RECOGNIZED BY THE IRS AS A 501C3 ORGANIZATION. CONTRIBUTIONS ARE TAX DEDUCTIBLE TO THE FULLEST EXTENT ALLOWED BY LAW.