Many patients diagnosed with multiple sclerosis will tell you they could quit their jobs and retire to Hawaii if they had a dime for every time they heard, “but you don't look sick.”
During March, national MS Education and Awareness Month, the Multiple Sclerosis Foundation (MSF) is launching a campaign called “It Takes a Team to Tackle MS” to raise public awareness about this increasingly visible disease, which affects approximately 2.5 million people worldwide. The MSF also is educating MS patients themselves about the medical products that can ease their symptoms. The campaign includes several educational initiatives, product promotions and grant giveaways the foundation hopes will attract the attention of HME providers.
MS is an autoimmune disease that is not contagious or fatal, but its causes, and therefore its cure, remain unknown. However, with advancing health care knowledge and more effective medications, MS patients are living approximately 50 years after onset of the disease, which makes managing symptoms the central focus of the MSF and its March awareness campaign.
The foundation is looking to increase its reach by building collaborations with HME providers. According to Tammi Robinson, MSF director of program services, the foundation receives more than 25,000 inquiries each year from callers seeking answers to product-related questions the foundation does not always have. “We are looking for [HME providers] to come to our foundation and provide instruction that will train and educate us in the latest trends happening in the lives of MS patients.” MSF hopes to tap providers' knowledge of changing legislation, the products MS patients are using and, Robinson says, “anything that will best equip us to instruct the patients who turn to us for information.”
MS symptoms vary greatly, which means product needs vary just as much. Derrick Lee, MSF assistive technology coordinator, says MS equipment generally includes wheelchairs, walkers, canes, portable commodes and hospital beds.
On a good day, most observers cannot tell a person with MS from anyone else, but periods called exacerbations, during which symptoms flare, can make everyday tasks uncomfortable and overwhelming. MS-related fatigue, for example, can be caused by elevated body temperatures following hot baths, showers, exercise or exposure to high temperatures. Heat-related fatigue affects up to 80 percent of people with MS, but most endure the fatigue, and the resulting depression it can cause, without realizing that products are available to help. Educating patients about heat solutions was the impetus behind the MSF's 2004 Cooling Program.
“When an MS patient gets too hot, they often will be completely wiped out and not do anything else all day,” Lee says. “We want patients to know that cooling vests are out there to help with their heat intake.” The foundation is giving away cooling vests, brim hats, wristbands and neckties donated by such manufacturers as Steele Inc., GlacierTek and Heat Relief Depot.
Another way the MSF is tackling life-improvement initiatives is through the Brighter Tomorrow Grant program, which provides patients with goods or services — such as computers, car repairs, washers and dryers or gym memberships — up to $1,000 in value to improve their quality of life.
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To request an MS awareness kit, e-mail awareness@msfocus.org or call 800/225-6495.
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If you know of customers who would qualify for Brighter Tomorrow grants, call 888/673-6287 for applications.
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For details on the 2004 Cooling Program, visit www.msfocus.org.
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To provide assistance on product training, call Derrick Lee at 888/673-6287, ext. 140.
