March 2012 Volume 1

MS Connection
The Newsletter For The Movement To Kill Multiple Sclerosis

The

March: MS Awareness & Education Month

National MS Education and Awareness Month is an effort by the Multiple Sclerosis Foundation (MSF) and affiliated groups to raise the publics awareness of multiple sclerosis. The vital goals of this campaign are to promote an understanding of the scope of this disease, and to assist those with MS in making educated decisions about their healthcare. Efforts to raise awareness of MS take place throughout the country. Anyone affected by or interested in learning more about MS is invited to participate in activities and to broaden their understanding of MS throughout the month. on this events or other Awareness week, March events this month, go to 12 18, is filled with www.msaa.org or many www.nationalmssociety. different activities to help fight to kill the connection to MS. Some of the activities include the annual MS Walk, generate aWEARness by wearing orange and tell- A group of walkers begin the MS Walk at Spring Hill College March 2011 ing people why youre wearing it, or org, or go to your local volunteering at the MS MS chapter. Pool Party. To get more information

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Further Research on MS hispanic Patients

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Drug Packaging Problem

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Spotlight: Living With MS

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Study Suggests A Need For Further Research On MS Experience Of Hispanics
Findings from a study of Hispanics with MS call attention to the need to better understand unique characteristics of MS in this population and the need for more accessible and culturally relevant mental health and social services. Researchers found that a sample of Hispanics with MS reported more pain, fatigue, cognitive problems, mental health problems, and dissatisfaction with their access to mental health care than the general MS population, when approximate comparisons were made reviewing data from the Sonya Slifka Longitudinal MS Study. Pilot Research Award from the National MS Society supported the study by Robert J. Buchanan, PhD, and other collaborators. While MS is more common in countries at northern latitudes and in Caucasians with northunderstanding how the disease is experienced in this population. Previous studies found that ethnic minorities are at

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port services targeted to their specific needs. A total of 99 Hispanics/ Latinos with MS agreed to participate in a telephone interview including questions on demographics; symptoms and disease characteristics; physician services; mental health status; MS-related feelings and experiences; and a standard Health-related Quality of Life survey. Researchers compared these findings to similar data from 2000 people with MS who enrolled in the Sonya Slifka Longitudinal MS Study. Fewer Hispanic respondents were employed; 33% compared to 44% in the Slifka Study. The type of MS was similar in both groups, although Hispanics were younger at disease onset and at diagnosis. There also appears to be disparities in symptoms. For instance, 94% of the Hispanics in the pilot study said fatigue had an impact on their daily activities, while 83% of the Slifka Study respondents reported fatigue as a symptom. Hispanics/Latinos also reported experiencing more pain (73% vs. 54%) and cognitive problems (83% vs. 56%).

Potential Drug Packaging Problem

The United States Food and Drug Administration (FDA) has notified the public that a packaging problem may have occurred with eight narcotic-type drugs (such as Opana, Percocet, and Endocet), where a stray pill may have gone into anothers packaging. No problems have been reported from this potential mix-up. According to the FDA, these drugs were manufactured and packaged for Endo Pharmaceuticals by Novartis Consumer Health at its for more information. While no problems have been reported, Novartis Consumer Health is issuing a voluntary recall of certain-sized bottles of these OTC medications, with specific expiration dates. For a full list of recalled products and instructions for how to return a product to Novartis Consumer Health, please see their recall notice.

ern European ancestry, MS affects most ethnic groups, including Hispanic and Latino populations. Ensuring that Hispanics with MS receive culturally competent care and access to necessary services requires

greater risk for depression and poor mental health, and less likely to receive adequate care for these problems. Investigations like this study are necessary so that Hispanics/Latinos with MS can get care and sup-

Lincoln, Nebraska manufacturing site. Please see the FDAs warning

MS Fact: Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision.

MS Fact: Although MS occurs in all ethnic groups, it is more common in Caucasians of north European ancestry.

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Step Into Her Shoes; Living With MS
tion of the water below her waist. She remem bers, all of a sudden I was standing there and I knew the water was hitting my legs, I could see the water hitting my legs, but I just couldnt feel any thing. I thought I was going to be paralyzed for the rest of my life. I was terrified. As she called out for her husCarmen Miranda, age 50 band Raul, she knew she wasnt going to At the age of 28, like whatever was causCarmen Mirandas life ing this. Since there changed forever. She were no MS specialists always realized the in Miami, Fl, she flew sensation of pins and with two of her sisters needles in her legs, but she never thought to New York and she it was more than just learned that she had being cold or any norMS. mal discomfort. That She knew that she changed one day as she wasnt willing to let was showering. When this disease take life she turned on the wafrom her to early, so ter, she realized she she decided to change couldnt feel the sensa- her life in certain ways to stay healthy. She avoided heat at all costs, she always carried ice packs with her wherever she went, and would try her best to avoid as much stress as she could. Through the years, the disease has caught up with her. Miranda explains, When I was younger, I just had poor strength and balance. I only had a short problem with paralysis, but I got lucky with how slowly my symptoms progressed. Now a days, she is facing life at a much slower pace and finds herself weaker than before. She also has to change her urinary catheter about three times a day and one of her mediations comes with a side effect of slight memory loss.

MS Fact: Approximately 400,000 Americans have MS, and every week about 200 people are diagnosed.