Women and MS: three out of four?

More women than men develop MS. Is it 2 to 1 or 3 out of 4? The estimates range because statistics on MS have never been absolute. Women also predominate in other autoimmune diseases from rheumatoid arthritis to Sjogren's syndrome. Basic biology says the immune system acts differently in men and women. In both sexes it functions by rejecting foreign proteins--but a woman's immune system generally responds more quickly than a man's. Most of the time it will also tolerate an embryo, with all its foreign proteins, and allow it to develop into a baby. Therein may lie keys to treatments or cures--for women and men.

Research implications

Statistics on MS emerged only after World War II and came first from that public health treasure trove, the health records of 2 million young people in military service. The vast majority, of course, were men. Later, as scientific medicine developed, women of childbearing age were routinely excluded from clinical trials to protect unborn babies. As Dr. Patricia O'Looney, the Society's director of Research and Training Programs, explained, it was believed this wouldn't matter because men and women would respond equally to the same treatment. The bottom line today: unexamined assumptions and unasked gender-based questions stand in the way of more complete knowledge.

Last year, the Society convened a blueribbon task force to analyze the current state of understanding about sex differences in MS and in autoimmunity. This summer, the panel is publishing guidelines directing MS researchers to key questions. Some of these questions are, indeed, already the focus of Society-funded research projects. Additional gender-based research will receive very high priority at the Society. But there's more to this story than medical research.

All the rest of it

Beyond the great unfairness of having MS at all are all the large and small unfairnesses of modern life as a woman. Laws that once limited women have been changed. But social expectations are in a state of flux. Stone Age stereotypes coexist with assumptions from Never-Never Land.

Add to this mix the stresses that fall on a woman with a chronic disease and disabilities. For example, while mainstream feminists have successfully fought against "love-marriage-motherhood" as the only appropriate goals for women, a woman with MS may find people acting as if she were asexual, unmarriageable, or, even an unfit mother--as has been argued in some child custody battles.

Boxing gloves and vulnerability

Today's women are wearing boxing gloves and piloting space shuttles. Today's women reject dependency--at least that's the message of popular culture. But for women and men, having MS is an in-your-face proof of vulnerability, and it challenges definitions of independence. Gender stereotypes lurk in all kinds of attitudes and social expectations and can easily skew the decisions a woman may need to make about her job, finances, and personal relationships.

Today's women, with or without boxing gloves, are still looked at as the "natural" care--providers of kids, elderly parents, and of their mates, if illness or accident demand it. The reverse--when a man must provide care for a woman can all too easily feel unnatural, "unmanly", even humiliating to both the carer and the cared-for.

Women with disabilities are often depicted as noble or brave but rarely as sexually attractive. According to Dr. Margaret Nosek of Baylor College's Center for Research on Women with Disabilities, their doctors often fail to talk about safe sex, for example, as they do with their nondisabled patients. Ironically, women with disabilities may be targeted by sexual abusers--not only by rapists but also by emotional abusers who get off on a special sense of virtue or power when their partner is "abnormal".

The gaps in scientific understanding translate into notable blanks when it comes to MS and the life events only women have: menarche, menstruation, pregnancy, birth, nursing, and menopause. Practical questions about the best birth control methods, using fertility drugs, handling PMS, or taking hormones after menopause meet the refrain, "We don't really know; there's no research." And while a general climate fostering individual empowerment has made itself felt in doctorpatient relationships, as recently as 1993, a small Society-sponsored study suggested that women who told their doctors about early MS symptoms sometimes had them explained away as "psychological". This happened more often to women of color than to white women and to no men at all in this study.

InsideMS will be addressing women's issues and listening to women's questions for the foreseeable future. Not only because as many as 3 out of 4 people with MS are women but because all such questions affect the fight to end MS for everyone.