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Women and MS, National Report Documents How Women With Multiple Sclerosis View Work & Family

March 2, 2015

FOR IMMEDIATE RELEASE: (MONDAY, MARCH 2, 2015)

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60% Try To Hide Symptoms At Work, Despite Being Comfortable Discussing Disease with Boss and Co-Workers

Majority Worry about Their Ability to Keep Working; Work Flexibility Tops Their Wish List

New York, NY—Tuesday, March 3, 2015-- “Women and MS: The Working Mother Report,” released today, is a new national survey of 1,248 working women with an average age of 40 who have been diagnosed with multiple sclerosis. The survey results reveal a range of challenges and concerns facing women living with MS while dealing with the stresses of work and raising a family. MS Awareness Week, March 2 – 8, 2015, initiates a month of educational outreach nationwide to heighten awareness and understanding for a disease that affects over 2.3 million people worldwide.

The Working Mother Research Institute (WMRI) conducted the survey in partnership with sponsor Novartis Pharmaceuticals Corporation and knowledge partner, the National Multiple Sclerosis Society. Women represent about three quarters of the more than 400,000 people estimated to have MS in the United States.

Highlights of the Women and MS survey include:

  • Sixty percent of women surveyed say they have tried to hide their MS symptoms at work; however, 61% say they are comfortable discussing their symptoms with their friends at work and 59% are comfortable talking to their supervisor. However, only 39% say their boss is interested in helping them manage their symptoms at work.
  • Forty percent of working women with MS say adjusting their work schedules helps them cope with their MS — of these, 38% reduce their hours and one third work a flexible schedule.
  • While 95% of survey participants are employed (77% full-time), a large majority (71%) worries about their ability to continue working. Still, 64% report feeling optimistic about their ability to continue working.
  • Eight in 10 respondents say they are currently experiencing symptoms of the disease or have in the last three months. The most common symptoms are fatigue, numbness, tingling and problems with vision, walking, pain, and cognition. The average age of diagnosis for respondents was 32. Ninety-five percent report having relapsing-remitting MS, in which symptoms flare up between periods when they abate.

Jennifer Owens, director of the Working Mother Research Institute, says, the “Women and MS” study shows a striking, proactive attitude among women with MS as they juggle the pressure of their health concerns and symptoms as well as the typical stresses of parenthood and work. Women we surveyed say they make sure to prioritize how they spend their own energy so that they can keep their loved ones, meaningful work and healthy-living activities front and center.” The full results of the report can be found here.

Multiple sclerosis is a disease of the central nervous system, in which the body’s immune system damages myelin, the protective covering on nerve fibers, and the nerves themselves, so that nerves can’t properly transmit messages to and from the brain.

“These results bring greater awareness to the unique challenges women with MS are facing,” said Christi Shaw, US Country Head, President of Novartis Corporation and President of Novartis Pharmaceuticals Corporation. “As a leading partner to this community, we are committed to providing resources and support to help people with MS advocate for themselves to better meet their needs at home and in the workplace.”

The Diagnosis
Women and MS finds that 86% of the women were diagnosed between the ages of 16 and 40, with 71% diagnosed within six months of seeing a doctor for symptoms.
The average age of the survey respondents was 40, while the average age of their diagnosis was 32. Nearly 80% of women surveyed are taking a disease-modifying medication, and of these women, 61% are taking it by injection.

MS and Motherhood

  • Having MS does not appear to affect a woman’s decision to marry or have a relationship. A full 95% agree that “I can still have a strong relationship with my child/children.” Women with mobility issues (18% of respondents) are more likely to have difficulties participating in family activities.
  • A vast majority (85%) says they are currently experiencing MS-related fatigue, which is unique and generally more disruptive than normal fatigue.
  • Sixty-four percent of women surveyed say their symptoms or relapses prevent them from participation in activities with their children, while 83% of women with mobility issues agree.
  • More than half of the women surveyed say there is less spontaneity in their family because of their fatigue, and 83% with mobility issues agree.

“This survey provides valuable insights into how MS is impacting work and family life of women living with this disease,” says Cyndi Zagieboylo, president and CEO of the National MS Society. “It also provides opportunities for the Society to connect working mothers with the information, resources and people they need to live their best lives.”

Moms with MS

  • Flexibility tops survey participants’ wish list: While 95% say flexibility to take time off for doctors’ appointments is important, only 43% are able to do so. Seventy-six percent want to work from home, but only 26% say they can.
  • Forty percent of the women respondents say they adjust their work schedules to help them cope with their MS. Of those, 38 percent reduce their hours, and about a third option for a flexible schedule.

Methodology
The Working Mother Research Institute developed a national survey about how MS affects women. Of the 1,248 respondents, all of who have MS, 73% were married, and 67% had children under age 18. Bonnier Custom Insights hosted the online questionnaire and respondents were recruited through communications from the National Multiple Sclerosis Society between August and October 2014. Maria S. Ferris Consulting, LLC, analyzed the data from qualified respondents who completed the questionnaire. The final results are documented in the report posted on workingmother.com and written by the Working Mother Research Institute.

About Working Mother Media
Working Mother Media (WMM), a division of Bonnier Corporation (bonnier.com), publishes Working Mother magazine and its companion website, workingmother.com. The Working Mother Research Institute (workingmother.com/wmri), the National Association for Female Executives (nafe.com) and Diversity Best Practices (diversitybestpractices.com) are also units within WMM. WMM’s mission is to serve as a champion of culture change. Working Mother magazine is the only national magazine for career-committed mothers. Follow us on Facebook, Twitter, LinkedIn and Pinterest.

About the National MS Society
The Society mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected by MS. In 2014, the Society invested $50.2 million to advance more than 380 research projects around the world in order to stop MS in its tracks, restore what has been lost and end MS forever. Through its comprehensive nation-wide network of programs and services, it also helped more than one million people affected by MS connect to the people, information and resources needed to live their best lives. For more information on MS and the National MS Society programs and services, visit: www.nationalMSsociety.org.

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PR Contact, Working Mother Media: Andrea Kaplan, andreakaplanpr@gmail.com, 917-836-2741

MS Society PR Contact: Arney Rosenblat, arney.rosenblat@nmss.org, 212-476-0436

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. 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. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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