Multiple sclerosis (MS) can have severe implications on the lives of European women with the disease, finds a new report, affecting their education, their careers and their relationships.
This disproportionate burden of MS in women versus men was the focus of a study, “The Socioeconomic Impact of MS on Women in Europe,” that was commissioned by Merck and presented Oct. 25 at the 7th Joint ECTRIMS-ACTRIMS Meeting in Paris.
Conducted by Charles River Associates, it involved MS associations in the Czech Republic, France, Germany, Italy, Poland, Spain, Sweden and the United Kingdom. Together, these eight countries are home to 72 percent of Europe’s MS population, and an estimated 77 percent of European women with MS.
The study — based on a review of available literature, interviews and an online survey of 807 women with MS — revealed that about 21 percent of survey respondents had been misdiagnosed prior to their real MS diagnosis. On average, women have to go through five visits to clinical practitioners and spend about half a year to be correctly diagnosed.
This delay creates a sense of uncertainty and emotional upheaval, preventing a suitable and early therapeutic intervention. Even worse, it also threatens relationships. About 41 percent of the women who responded to the survey had separated or divorced since their MS diagnosis; of these, 88 percent said MS was a contributing factor in the decision. In addition, 36 percent said MS had forced them to decide not to have children at all, or to alter the timing of when to get pregnant.
“Evidence shows that, although women are twice as likely to receive a diagnosis of multiple sclerosis than men, the gender-specific burden of the disease in women needs further research and understanding,” Raj Kannan, Merck’s senior vice president of global head of neurology and immunology, said in a press release.
Kannan added that the uneven impact of MS on women compared to men is still underappreciated — and that recognizing the additional MS burden on women and developing targeted policy interventions could help ease the gender-specific challenges these women must face throughout their lives.
As MS progresses, women with the disease must face worsening disabilities. Nearly 70 percent of those surveyed said MS hurt their ability to remain caregivers; this causes emotional stress and threatens the stability of their families. In addition, 66 percent of women said their job status was affected, with 38 percent saying they can no longer work at all. As a result, those with MS are much more likely to have below-average household income.
Despite the efforts of MS associations and other entities to raise MS awareness, many of these women said they still feel excluded and discriminated by their friends and co-workers.
Click here for more detailed information on the Merck report and its findings.