Work is an important aspect of our lives, not only providing vital income for our families, but offering independence and a sense of accomplishment for the individual. However, a diagnosis of multiple sclerosis (MS) can greatly affect employment and career opportunities due to the unpredictability of the disease.
Even though the nature of how we work is changing towards a more fexible approach, with advances in technology offering remote working, many people with MS still struggle to stay in work.
A diagnosis of MS does not impact skills and experience; but the symptoms caused by MS can vary and fluctuate over days and weeks, and interfere with a person’s ability to work.
As the disease progresses, disability can accumulate, making it more challenging to remain in work.
— prime working years — with potentially decades of employment ahead of them.1
How many people living with MS say that MS has impacted their working lives?
How many caregivers say that MS has impacted their working lives?
of people with MS and
caregivers need to give up work completely.*2
*Percentages based only on patients and support partners in Canada and the EU5 countries in the wave II, 2017 survey.
As the disease progresses, increased disability — such as difficulties in walking — imposes a heavy burden on people with MS and on their caregivers.
62% of people with MS, who were not currently employed, said fatigue was the most common symptom that prevented them from working.4
Flexible working hours
Rest during work breaks
Better awareness of MS amongst colleagues
MS can lead to substantial economic losses for society.3 Unemployment levels among people with MS are higher than those in the general population, even at low levels of physical disability.3
The number of people with MS who are able to work decreases rapidly as their disability progresses (as measured by the Expanded Disability Status Scale (EDSS*). Once an EDSS of 9 is reached, only a few people with MS are still able to work.5
*Measures the degree of physical disability based on neurological exam of seven systems throughout the body, plus a person's walking ability. The EDSS and its predecessor DSS have been used in nearly every MS clinical trial in the last 40 years.
for a person living with MS.
This is almost double for their caregivers — due to not being able to stay in work and the impact of being a caregiver on their work.
due to not being able to stay in work and the impact of being a caregiver on their work.
The average annual cost of MS per person is €40,313, which is made up of direct medical costs, indirect costs, such as loss of productivity at work and informal care costs.6
Direct medical costs
Indirect costs
Informal carecosts
Transport
Specialist equipment
Medication
Help with household activities
There is currently no cure for MS, however, early disease-modifying treatment can significantly reduce disease activity and disability progression.
References
MS International Federation. What is MS? Available at
MS MindSet Survey Results.
G Giovannoni et al. Brain Health: Time Matters.
MS International Federation: Employment and MS. Available at
Kobelt, G et al. New insights into the burden and costs of multiple sclerosis in Europe. Multiple Sclerosis Journal. Volume: 23 issue: 8, page(s): 1123-1136
P Kanavos et al. Towards better outcomes in multiple sclerosis by addressing policy change: The International MultiPlE Sclerosis Study – IMPrESS.
MS: Enough Make Welfare Make Sense.