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Meeting the Needs of People with Primary Progressive MS, Their Families, and the Health Care Community

July 8, 2011

We are pleased to announce the publication of the article, “Meeting the Needs of People with Primary Progressive Multiple Sclerosis, Their Families, and the Health Care Community” (PDF) in the International Journal of MS Care. This article, authored by Nancy J. Holland, EdD, Diana Schneider, PhD, Robert Rapp, MAPA, and Rosalind C. Kalb, PhD, appears in the summer issue, which is dedicated to the needs of people with primary-progressive MS.

The article describes the findings and recommendations of a collaborative effort by the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America (MSAA) to analyze the needs of individuals and families living with PPMS and respond with programs that would meet those needs. Acknowledging that this segment of the MS population is an underserved group, the two organizations analyzed information concerning their experiences and support needs from three self-report databases – the Society’s Sonya Slifka Longitudinal MS Study, MSAA’s 2005-2006 Comprehensive Client Needs Assessment, and the Consortium of MS Center’s North American Research Committee on Multiple Sclerosis (NARCOMS) Patient Registry. The group also conducted focus groups with people living with PPMS, MS specialists, neurologists, and MS-specialist nurses.

The model created by this unique collaboration is one that could also be applied to other chronic illness populations.

Read more about primary-progressive MS.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system. Symptoms range from numbness and tingling to blindness and paralysis, and there is currently no cure for MS. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. An estimated 1 million people live with MS in the United States. Most people with MS are diagnosed between the ages of 20 and 50, and it affects women three times more than men.


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