This question has posed a puzzle for doctors and scientists for years. Who is likely to be diagnosed with NMO? What triggers NMO? What are the underlying causes of NMO? How can NMO be prevented, treated, cured? Like other autoimmune diseases, nobody has the answers. From what I’ve learned through the course of my condition by personal research and the 2010 Rare Neuroimmunologic Disorders symposium, a person with NMO has to: (1) possess the genetic susceptibility for the disease, and (2) be exposed to the environmental factor that triggers the disease. Both must happen in order for NMO to develop; they are not mutually exclusive.

On that note, I recently attended the NMO Patient Day in L.A. sponsored by the Guthy-Jackson Foundation (to be outlined in a future post) where I befriended E and J, two young women who, like me, are ambitious and proactive types. All three of us are “newly” married without children–E for three years, J for three months, and me for six months. All three of us are thinking about possibly having children, forging forward in our vocations while being good wives to our husbands. Over dinner while the men talked man talk, E, J, and I discussed how it seems most of the people with NMO share similar qualities: determined, intelligent, strong-minded and strong-willed personalities. Nobody we met was just sitting around on their couch watching “Jersey Shore” marathons. Everyone was doing something in addition to dealing with their NMO. And almost all of them were women.

What did this all mean? E, J, and I had no idea, but I pointed out that it seems autoimmune diseases often inflict people with high stress levels. This is no surprise since most of our attacks and symptoms arise almost immediately after or even during stressful life situations. (This was, in fact, noted by the doctors.)

I thought back to all the people with NMO I’ve gotten to know over the years either online, on the phone, or in person. All of them, with the exception of two (one whom I never had contact with but I’ve kept in touch with his mother), all have been female. Additionally, all are driven, and compassionate individuals. Everyone has been open in sharing their stories and struggles; perhaps this is due to the fact that NMO is very rare and so we have to be candid with our lives in order to make connections which are rare in itself since our network is so small. E pointed out that most people she’s met with MS are much more private about their condition, and I reasoned that because MS is more widespread and the research more advanced, MS patients can keep quiet and still receive adequate treatment. NMO, on the other hand, is an orphan disease, and so with the little research and resources available to NMO patients, we feel we need to speak up, speak out, and speak loudly about our disease in order to move and shake the medical world. “Hello! We need help too!” But when I think about S and B whom I’ve been in contact with for several years now ever since my diagnosis in 2003, I find that they, too, are like E, J, and me. Of course, the future of NMO medicine cannot simply be hinged upon similar traits without hard evidence, but I can’t help but wonder why the majority of us with NMO are this particular type of woman. Any thoughts?

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4 Discussion to this post

  1. EZE says:

    is there any research to say the percentage of male/female with NMO? since being with HM through med school/residency, the medical field as well as research is still fairly male dominated. if in fact that NMO is mainly affecting women, it could be a reason why it doesn't get the attention it deserves. don't take this as a knock on women, but i've heard stories of male 'dominance' in the medical profession. BUT… HM told me that there has been significant change just in the past few years. not sure how that will affect patients with your condition. BTW, how many female doctors have you dealt with since diagnosis?

  2. the Blind Cook says:

    EZE: You pose a very interesting point. If you want to look at all possible variants, how about the notion that women tend to go to the doctor more than men, and thus, are more likely to be diagnosed? Men, on average, tend to avoid doctors and ignore their symptoms. Women, on the other hand, prefer to deal with illnesses head-on.

    I'm not sure about the ratio of NMO men vs. women, but I do know from the previous symposium that the percentage of autoimmune diseases getting diagnosed in women have increased as of late while the percentage in men with the same diagnoses have remained the same. Strange, no?

    Lastly, referring to your last question about how many female docs I've seen since diagnosis, do you strictly mean neurologists? I've seen one female neuro and met a handful of other female neuros at these sorts of conferences. At the recent NMO Patient Day Q&A session, out of the 5 or so docs on the panel, only one was female. I was trying to notice if the woman doc was given less of a chance to answer or asked less questions (just because the feminist side of me crept out), but it really seemed balanced. Maybe we are making progress…?

  3. Jenna says:

    Just reading this post I also have 7 other windows open, trying to multi-task. Hmmmm…seems to me that a trend might be more than that.

    Odd, but it never occurred to me to stay private about this disease. Once I was diagnosed I sent out a mass email telling everyone I'd be ok and we'd work through it. Besides, it's tough to hide it so why bother trying? I can understand why people with other disorders, like MS, would choose to because discrimination really hurts but I think that if people are going to be ignorant than I definitely don't want to be associated with them anyways.

    I'm loud and proud that I want a cure for NMO.

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