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More MS news articles for May 2003

New National MS Society Survey Reveals Lifestyle Impact of Multiple Sclerosis

Patients and Caregivers Find Satisfaction with Medical Community and Employers, While Interpersonal Relationships and Self Worth Suffer

May 15, 2003
SOURCE National Multiple Sclerosis Society

A new survey of more than 800 people with Multiple Sclerosis reveals that (as a group) they continue to be hopeful of a medical breakthrough, and are fighting the good fight.  However, coping with a devastating disease has taken its toll on them at the office and at home.

According to Judith G. Cohen, president of the Greater Delaware Valley Chapter of the National Multiple Sclerosis Society, sponsor of this groundbreaking survey, the results paint the portrait of a heroic effort to maintain a lifestyle and a mental state that is being ravaged by a disease that doesn't have as high a profile as others.

The survey was split into four segments: home life, social life, work life, and health/medical issues.  Some of the key findings of the survey include:

MS typically exerts a significant impact on one's home life.

Developing MS invariably leads to changes in one's social life, but the extent to which this occurs is largely impacted by one's age and length of time with the disease. Without a doubt, developing MS significantly reduces one's ability to work.  Even for those not forced out of the workplace as a result of developing MS, having MS often necessitates changes and accommodations. Those with MS actively treat the disease with medication and therapy, and their satisfaction level with the primary care community is quite high. "Society's lack of awareness or knowledge of MS may also contribute to the issues facing people contending with this devastating disease," says Cohen. "Almost all respondents said most people they come in contact with don't know much about MS.  That's something we have to address, and sharing the results of this survey is a start."

Linda McAleer, chairman of the local chapter's Board of Trustees and president of The Melior Group, adds that the chapter is creating new programs based on the results of this survey.

"We will expand many of our services to address the concerns of both the members and their caregivers," she said.  "For example, we will create a special employment newsletter that would spotlight COBRA, SSDI, insurance issues, and disclosure advice.  We will provide more information on respite care and funding, and particular attention will be given to increasing awareness of MS as a disease."
A profile of the respondents shows that women (82%) between the ages of 40 and 54 (74%), who are married and no longer have children living at home (64%) replied to the survey. The typical participant has also had the disease for 12 years.

The Melior Group, a Philadelphia research firm, conducted the benchmark survey on behalf of the Greater Delaware Valley Chapter of the National MS Society in two phases -- telephone and mail -- on a pro bono basis.  A total of 850 responses (a response rate of 29%) were received by the chapter.

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