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oh that is work yep so i mean i'm thank you very much for inviting i really appreciated i'm not i'm gonna
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switch gears a little bit and talk about multiple sclerosis something
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that was uh uh mentioned in passing earlier this morning
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so um it's important to bring this disease to the forefront about discussion because it's the
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number one cause of neurologic disability about women of reproductive age so we're gonna
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switch gears for menopause and and demanding alice's that are generally more
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common out toward the end of um of live too
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a condition that strikes people at the prime of their life um
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multiple patients on there are in there of third and fourth decade of life when they're diagnosed
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and what we found out also is that in the united states at least between two thousand six and two thousand fourteen
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the rate of pregnancies among m. s. uh patients actually increased as opposed to um the rate of
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primus pregnancies in general population that in fact went down over corresponding time period which i
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take some personal credit for that but certainly not just me um i think people
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feel more comfortable cancelling uh m. s. patients on terms of safety pregnancies
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so with that in mind i've started some years ago a women's health program
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at partners m. s. centre where have a privilege to be working
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and uh that program centres on providing um
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individualised reproductive cancelling to our patients
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so it's a very complex subject like with any chronic
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illness uh it involves discussions of parenthood decision model
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could decision particular genetic risk uh it involves specific preconception
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here that is um a unique for patients
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uh it involves discussion of fertility and infertility in animist population in their their sometimes in
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the course of their disease where we don't want them to get pregnant when there
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taking potentially toxic medications that would not be compatible with pregnancy and then there
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are other times where we really want to get pregnant as quickly as
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we can when they're off their treatments and we don't have the luxury of
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waiting six to twelve months until their conception takes place um so
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when is it safe for the patient with them asked to consider mother could
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get that to do there need to be a specific disease characteristics
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um and disease control state that would make it safer for that moment to just to
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stop for treatment which they all have to do and start trying to get pregnant
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and also what are the psychological impact of pregnancy what is the risk of post part
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um depression for example so we know that in multiple scores as patient population
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the risk of major depressive disorder over the span of their lifetimes about seventy percent it's very high
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and the risk of bipolar affective disorders at least twice as high as as in general population what we do
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not know is whether the risk of course part of depression no patience is increased and if so
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what can we what can be done about that um so i
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feel strongly that we should address these types of questions
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um through um disease based studies so there we
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have now sixteen drugs approved for multiple sclerosis
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and the united states and each one of these compounds run either on pregnancy registry
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and that's great um but i feel that we need to have a comprehensive approach to this uh we need to study and and
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prospectively stay patients with multiple sclerosis we uh the respective what treatment
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there on if there happen to be in no treatment
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um all the same and ideally we need to start them before they can see we need to look at the preconception time
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conception time pregnancy duration and we need to look at the kids
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with me to do what was done for epilepsy patients by
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you know um page canal and and others uh where they
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determined the risk for kids weren't the moms with seizures
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various types of risks so we don't know that in m. s. community and we need to find that out so um
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i will um also mention that
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i'm slightly different um subject uh here the last point on
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the slide is that um like with any chronic illness
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physicians tend to focus on that almost to the exclusion of other things so
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what we found out when we did the studies at all women
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who have trouble emulating we have difficulty walking when you the cane or walker or wheelchair
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to get around they don't get the screening that they should be getting so they don't get
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their pap smears it don't get their mammograms they don't get the common ask these
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so whatever screening that ever general population women routinely receive all patients are not getting especially if
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they have trouble walking so that's another issue that we address in the women's health clinic
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as well as of course things related to menopausal menopausal transition and
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potentially hormonal i'm therapies and such so um
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let me give you some a couple of um other ideas about the
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current challenges that come i'm into play when we look at
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care of younger women with a reproductive potential still comprehensive management
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programs for pregnant m. s. patients do not exist
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they do not exist in the united states um the uh situation might be a little bit better in europe especially in germany
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but in most countries are just not put together and we don't have
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clear evidence based guidelines of how to care for these patients
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um and therefore the level of care receiver patience is widely varied
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depending who's the provider and where such care is administered
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but there are very few real world perspective pregnancy cohort sort of all of longitude when i feel that's a
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giant gap in our research and in our understanding of this disease um uh in terms of research um
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knowledge but also lack of such trials then translates into like
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of guidelines unlike about ability to care for these patients
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in a uh evidence based manner um
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there's specific subgroups of all patients where we just don't know what
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pregnancy does to them those would be patients with higher disability
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older patience patience with unstable disease course patients with
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very high lesion burden on the imaging studies
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and again our understanding of what to do for these patients and how to manage them
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successfully should come from these prospective court trials that have mentioned
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and even though we've got much better in including patients in clinical trials in typical clinical trials
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that lead to drug approvals why why lefty a mitre can be discussing the results um
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oh that's neat about gender based results of the uh effects of the medications
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those don't don't tend to get published so when we read the paper
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describing the effects of the drug we usually get the average
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number we don't get hardly ever in the paper in publications you know
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ooh specific of women versus men drug effects note nor do we get reproductive age women
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versus menopausal women i can't imagine that those effects are gonna be the same
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so i'll leave you with this with the idea that this this is a a giant research yep
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it's again clinical knowledge gap and we need to focus our efforts on closing that gap as best as we can