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Survey Reveals Economic Toll of MS

Nearly Half of MS Patients Stop Working Within 3 Years of Diagnosis
By
WebMD Health News
Reviewed by Laura J. Martin, MD

May 25, 2010 -- All over the world, of the people who quit working due to multiple sclerosis (MS), almost half did so within three years of being diagnosed with the debilitating disease, a new survey shows.

The Multiple Sclerosis International Federation surveyed people with MS in 125 countries.

The organization says in a news release that its report highlights the importance of allowing people with MS to work flexible hours so they can stay on the job.

The survey, released for World MS Day, is the first to be conducted on a worldwide scale. The survey shows that:

  • The total average lifetime costs of the disease to the patient and society as a whole is $1.2 million.
  • MS is one of the most common neurological diseases among people in their 20s and 30s.
  • MS affects at least twice as many women as men.
  • Close to 60% of people diagnosed with the disease will suffer long-term disability.
  • There is no known cause and no cure.

The organization designed an online survey that was available in 10 languages and was linked to the World MS Day web site and a Facebook page; 8,681 people from 125 countries responded.

The survey also shows:

  • 87% had MS.
  • 96% were between ages 19 and 60, or "working age," and 42% had been diagnosed five or fewer years ago.
  • 59% of respondents with MS were employed, 68% of whom worked full time.
  • 67% said MS had affected their work, either by reducing hours on the job or forcing a change in occupations or in necessitating the taking of short-term or long-term leaves.
  • 41.5% of MS patients who were still working said they did so while seated, and 37% said flexible working hours would be important for them.
  • 60% said family support was important, and 49% identified supportive employers and colleagues.
  • 83% of those who were not employed said they had stopped due to the disease. That included 47% who left the workforce within three years of diagnosis.
  • 85% of those unemployed said fatigue was the most important barrier, and 72% identified mobility problems.
  • 45% said cognitive impairs were problematic, about 20% listed speech impairments and 13% tremors.

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