Recent Survey on Multiple Sclerosis

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.

Helping MS Patients Stay on the Job

James Wolfensohn, a past president of the Multiple Sclerosis International Federation and also a former president of the World Bank, says in a news release that the economic impact of the disease emphasizes the need of a concerted global effort to help people stay on the job.

"On World MS Day, we're reminded of the costs MS imposes on those suffering with the disease, on their families, and on society as a whole," he says.

"The cost to society of losing these people permanently from the workforce is enormous," Peer Baneke, chief executive officer of MSIF, says in the news release. "There needs to be greater awareness that a diagnosis of MS does not have to mean a lifetime without work. People with MS around the world continue to work and contribute to society, but this requires some flexibility on the part of employers and support from governments."

The organization recommends that:

• People with MS ought to be armed with information outlining options for employment, and they should understand their rights and what medical, financial, and social services are available to them.
• MS patients should be advised how to manage symptoms and stay on the job.
• Employers need to be educated on adjustments they could make to help people with MS and provide social, emotional, and financial support.

By Bill Hendrick