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- [00:00]
A
So I've been involved with studying genetics of OCD for a couple of decades. I think one of the biggest things that's been found is that this childhood onset form of OCD seems to be more genetically driven rather than through parenting techniques. So one thing I'll say to parents, if they're starting to talk about worries that they caused us, even if you wanted to cause OCD in your child, they were born and you say, okay, we want our kid to have ocd, let's do everything we can to have them develop ocd. No, that's not in your power. What we know from research is if you're able to address OCD sooner in childhood, if it's childhood onset, as opposed to 10, 15, 20 years later, your outcome is going to be significantly better. When you're an adult, there's so much hope, and I think sometimes parents or people with ocd, when you're living in the middle of this, it can be really hard to see beyond that. So we know, even looking at data, looking at the evidence, most of the kids who have OCD in childhood don't have full blown OCD as adults. It is not a life sentence.
- [01:13]
B
Have you ever felt so overwhelmed by your mental health concerns that it's hard to even contemplate getting help? Let's be honest, when you're really struggling, finding help and getting yourself to a therapy session can be really difficult. But that's where virtual therapy offerings like ours really make a difference. As a licensed clinical psychologist with 25 years of OCD treatment, I've worked with people to help them get their life back on track. I've also trained a clinical team to do the same here at nocd. NOCD is an online platform offering specialized, accessible and convenient OCD treatment. Our therapists take insurance and we'll work with you every step of the way to help you get your life back from obsessive compulsive disorder. So head to nocd.com to book a call to start your treatment journey. And don't forget to subscribe to our YouTube channel so you can stay up to date on our latest podcasts and webinars. Now, onto today's episode. Hello, everyone, and welcome to another episode of the get to Know OCD podcast. I'm Dr. Patrick McGrath, the chief clinical officer for no CD. Today, I'm joined by a friend.
- [02:20]
A
Hi. Hello.
- [02:22]
B
Hello. Dr. Evelyn Stewart. It's so good to see you. How's it going?
- [02:26]
A
It's great. Really happy to be here.
- [02:28]
B
Well, I'm thrilled you're and just to come to hear from Canada for nothing else at all. You have no other reason to be here this week? No, I'm kidding. It's the International OCD Foundation Conference. You're here. Thank you for spending a little bit of time with us away from the conference to do this chat.
- [02:44]
A
It's a pleasure. I love coming to this conference and, you know, with a world of OCD researchers and clinicians, including you, of course. It's like my favorite conference of the year.
- [02:54]
B
Mine too, actually, because it's a unique conference. It's not just people who work in the OCD field, it's people who live in the OCD field. Right. Which is always a fascinating thing. And so many people who stop us in the hallway and say, hey, I saw your paper or I saw your podcast or something, and they want to chat with you. So it's fun. Yeah. A lot of your work is in families, children, and genetics in the OCD world. And so I want to be sure that we touch on those three areas today. What, though, got you started in the OCD world first? Before we even go there?
- [03:31]
A
Yeah. So I love working with OCD affected families, love doing research in this area, but this was not my initial intent. So when I was in elementary school, I decided I wanted to be a pediatrician, a doctor for little kids. And then that kind of changed partway through med school, when, at this, it was a very long time ago, but it was the decade of the brain last week. What are you talking about? But it was the decade of the brain. And I found that really intriguing because they were talking about this as, you know, the last organ of the body where it wasn't really fully understood, and the connections between what makes someone a person and then the biology of it. So I think I was really intrigued and drawn into psychiatry in that way, child psychiatry. And then in reflecting back, it was a book by Judith Rappaport called the Boy who Couldn't Stop Washing. And that caught my attention. Why it did. Is that it? It seemed like a psychiatric condition, describing this disorder. Clearly, it's impairing. It's a serious disease, but it was treatable. So that's what drew me into the world of childhood onset ocd.
- [04:45]
B
That book changed a lot of people's vision and lives around putting a name onto something that I think had lived in the shadows for so very long. Right?
- [04:55]
A
Yeah, totally, totally.
- [04:57]
B
So you read the book. You're interested in it. Did you have a mentor in the OCD field, or did you have to kind of PAVE the way for yourself to get into it.
- [05:07]
A
I tried to find a mentor, so I had some very supportive people around me. I'm Canadian. You may or may not hear that in the accent. I don't think I have. So I was doing. I did med school on the east coast of Canada, psychiatry in the middle in Ottawa. And at that point, I was really intrigued, but I really wanted to dedicate time to learn about OCD in particular and learn how to study it. So someone connected me through to Mike Jennicke.
- [05:37]
B
He didn't know anything about ocd? Oh, no, nothing at all.
- [05:40]
A
So I think he was the one who coined that. You know, he called it a hidden epidemic. But he was really fantastic. So basically said, yeah, if you can get yourself some grants or find yourself funding companies, come on down to Boston and learn more. And that's kind of where it started.
- [05:56]
B
What was it like to work with Mike? I mean, he was a larger than life fella, that is, for. For sure. But, you know, in. He was kind of a lone wolf for a while in this area. Right. And. And so I'd be interested just hearing a little, especially, you know, we only lost him a year ago. So what was that like?
- [06:19]
A
It was amazing. So I think, you know, sometimes when you hear about someone or read about someone from afar, maybe you don't want to get to know them that well in person because you're disappointed you don't meet your heroes. But he was an exception to that case. So I think getting to know him, getting to see how his heart was really behind increasing public awareness of ocd. Super smart guy, but very funny. His approach to dealing with people, basically, he didn't judge. So whoever you were, he could give you time. And I learned so much from him because I was wanting kind of youngish way back then, and I was wanting to do everything. I wanted to be a great clinician. I wanted to work on OCD through the lifespan. I wanted to learn about research and all these different areas, and I wanted to be a great teacher of others. And sometimes, you know, you have to decide what things to do, what not to do. But one of the things he always said is, patients come first, families come first. He didn't say the word client back then, but we knew. So effectively, if you're torn between these different tasks, let's think about the people who are living with ocd. And that can guide you in making the right choice. I mean, there's a million and one stories I could tell you about him, but fun guy to be around Fantastic sense of humor. I realized, okay, I can fit in here because I like to use silliness and humor a little bit in the workplace. And I realized, okay, this could be a decent fit. But behind the humor was like, he took it very seriously, pushing forward the cause for OCD and helping OCD affected families, which I think was inspiring for me and for so many of us.
- [08:07]
B
In a lot of the early days, the focus on OCD was on adults, obviously. Right. I mean, so now you've worked with Mike, there's a lot of adult work going on, but OCD starts in childhood for so many people. And that was then the next landscape to kind of conquer about. How do we see OCD emerge, How do we recognize it? And it's been from the standards of what we see, how it develops, to more controversial ideas around pans and things. I would love to learn from you that evolution of how did we get into really focusing on kids and the development of OCD early on?
- [08:55]
A
Yeah, great question. I think in terms of looking at epidemiologic studies such as National Comorbidity Survey replication, I think that started to point out when OCD pops up, it is not necessarily an adult onset disorder. So looking at those trajectories was recognized that in boys, in males, they tended to onset earlier. So there was three peaks of onset, although around 8 to 10, the teen years and then early adulthood and, and then in girls or females, somewhere between 10 and 20. So that was when the majority of the new cases of OCD onset. So then after looking at that, there's a number of different studies that have been done, but there were some leading groups working on really the clinical work, which is I think the key important piece. And I think right from the beginning, or almost the beginning, there's some recognition that there's some distinct things that are there in, in childhood onset OCD and some potential involvement of inflammation, although that's not necessarily exclusive to childhood onset ocd.
- [10:10]
B
Right.
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A
Yeah.
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B
And then comes, I mean, there were controversies because it's still like medications. You know, there's some people who don't want to take meds when they're adults. There's some people don't want their children to take medications and things too. So all original medication studies are typically done on 18 to 21 year olds. Is that kind of the typical range? Then we've got to figure out how do we titrate dosages to children and adolescents and how does that experiment begin and how do you figure those things out?
- [10:44]
A
Yeah, so I think fortunately, those studies have been done, although I think probably appropriately, any new medications, they're studied in adults first in less vulnerable populations and then brought to kids. But, but it's a really well studied area. So pediatric OCD, it's really clear that in comparing SSRIs or the serotonin reuptake inhibitor clomipramine, it's super clear that that's greater improvement than placebo. That doesn't mean every child is going to respond, but when you look at groups. So I think there's definite clarity there that it's that same group of medications that works in childhood onset OCD as adult ocd.
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B
That's great.
- [11:29]
A
Yeah.
- [11:30]
B
And there's also then looking at it from the genetic set. Right. And you have, you've gathered some saliva in your day. Because I've seen the test tubes at conferences and people are. And they're putting the labels on. This is the dads, this is the kids, this is the moms. What have we learned from that? And what is excites you about looking at genetics in ocd?
- [11:54]
A
Yeah. So where do I start? Yes. So I've been involved with studying genetics of OCD for a couple of decades at least. I think one of the biggest things that's been found is that this childhood onset form of OCD seems to be more genetically driven. So that the genetic factors, if you were kind of to put it in a big cup, and all the reasons within one individual that you know, where it tips over and they get OCD and it's going to fill more of that cup. If you're looking at the genetic components for OCD, that starts in kids compared to adults, and that's been found a number of different ways, looking at twin studies, other kinds of studies. One of the things people jump to sometimes when they think, well, of course you think it runs in families. The parents who have OCD may just model to their kids, and then the kids learn that you need to wash your hands many times or you need to check things, that kind of thing. And fortunately, there's been a number of studies that have been done, one just published in the last couple of years with Kendler as a lead author, showing that parents are not the ones to blame. Although OCD runs in families, it does seem to be from inherited genes rather than through parenting techniques. There's an unfortunate history in psychiatry, especially in child psychiatry, where a child will come in who's ill and they'll say, okay, what did the mom do? Or what did the dad do? And this must have created this thing. But I think it's very clear now we can just put that aside that while there might be environmental factors that contribute to onset of ocd, it's not related to parenting. So I think that's a really important message for your viewers to understand.
- [13:42]
B
Can I still blame my mom for things, though?
- [13:44]
A
Well, you can blame her for other things.
- [13:46]
B
Okay. Okay. I just, I want to be sure I can hold on to something with that. So that's great. Hi, mom. So as people are coming in and they're thinking about getting treatment, especially for a child. Right. What are the barriers that you see to people kind of breaking into this? I've sometimes said, here's my personal thing. You, you hope that it goes away for about a year and then you hope the teachers will do something in school, and then you hope the school counselor will figure something out, and then you hope the GP will figure something out. But as you know, they don't take medications up to the level usually that they need to go to. And then we'll try maybe a general psychiatrist and maybe they'll do something and then we'll think about therapy and a specialist. And sadly, that's about the seventh or eighth step to the whole experience. And I don't know if you find that as well.
- [14:50]
A
So I would say yeah, I think it's just so hard and sad to. When families do come in contact and finally have access to where you know something about ocd, it's a signal that's been too long. It's been too long since when the symptoms started and when they've been able to access treatment. One of the just anecdotally something I've noticed in the last few decades of working with ocd, I think awareness is much higher now because people misunderstand it. You know that expression, I'm so ocd? Well, that's so off base. But at least people are aware of obsessive compulsive disorder. And now I think one of the biggest challenges is shortening the time between OCD is recognized or diagnosed and being able to access evidence based treatment. Because there's a lot of non evidence based treatment being offered out there. But exposure, response, prevention, this is the cornerstone of what we know for treatment. Medications, as you've mentioned, definitely they've been proven to be helpful in kids, but we always start with cognitive behavior therapy when possible, and medications. I see their role as being very valuable in some cases in terms of being able to enable the child to be brave enough to start along the CBT journey. So, yeah, so, unfortunately, I think there is still too much inaccess, just too many struggles of people who may actually now know that their child has ocd. Or for many youth, they're able to diagnose themselves, they can figure it out. But getting from there to a place where they are able to access treatment with someone who knows what they're doing and who understands OCD and understands that meditating is not necessarily your direct path out, or learning to relax is not necessarily a way to getting OCD off your back, so to speak.
- [16:53]
B
You'll have families who come in. They're kind of maybe on the fence about what they want to do here. What's your pitch to them? How do you motivate them to do the tough stuff and. And to take the step into doing treatment.
- [17:07]
A
Yeah. So I think one of the things that can happen is that the parents may be more motivated than the child is. May come in and say, fix my kid or fix my youth. And maybe that the child or youth is saying, there's no problem, no problem here. But it may not be that there's no problem. It might be that the notion of pushing back at OCD is scary. So I think one of the things to do is kind of learn a little bit about their life, learn about the way that OCD is bossing them around, or getting in the way of things they might want to do, hanging out with friends, getting in the way of school, getting in the way of sleep, all that kind of thing. So I think in terms of ocd, we know that folks with OCD might have difficulty tolerating risk or a difficulty with tolerating uncertainty. Like, you gotta tell me exactly what's gonna happen if I take this med. Well, I can't. You know, just similarly, if you had pneumonia and I give you an antibiotic, I can't tell you exactly how it's going to go. So I think part of it is working with families, gaining some trust, letting them know a little bit more about ocd, that this is a real disease, this is something that's treatable. We know there are treatments that are proven to work. Then trying to figure out what the barriers might be. Might be stigma around mental illness. For a number of parents or youth, they may be worried about being critiqued or that people will think they're crazy or that if they engage in treatment that it's going to be admitting to weakness. A lot of the time, people with OCD may be a bit perfectionistic, may feel like, I just need to suck it up. Figure out the answer myself and then just push forward. So it's not. Not understanding. That's not a reflection on them if they have an illness that requires treatment.
- [19:07]
B
Many of these families feel like they've been hit by a train. Right. I mean, because ocd, of course, relentless, doesn't care about the person with ocd, doesn't care about the family, what it's done to the family. I always say OCD has its own best interest at heart, not anybody else's. You must see people coming into the clinic then, just devastated at times and wondering, where is their child? Where did they go and what has happened?
- [19:34]
A
Absolutely. And not even just their child. Where is their household? Where's the family that they used to know? So some of the research that we did outside of the genetic work is looking at family functioning in ocd. So we asked the youth, moms, dads, siblings, where they're living in a home where there's ocd, and asking about the ways in which OCD didn't just impact the child or individual with ocd, but everyone else. And we found with mealtimes impacted that getting out of the house in the morning, being late for work. We found a half of moms and a third of dads reported on a daily basis that their job or occupation was impacted significantly by their child's ocd.
- [20:19]
B
By their child's. Just want to make that very clear.
- [20:21]
A
By their child's ocd. So this is a disorder whose impacts are ongoing, not just on the youth and not just on their developmental trajectory and getting in the way of them learning the things and experiencing the things that they're supposed to, but impacting moms, dads, siblings. So we know it's just. It's a devastating condition. And often people kind of live in secrecy to some degree, or they may be embarrassed, they may not want to tell people, or they share it with some people who just don't understand.
- [20:56]
B
Right. I got a phone call one time, I remember, and it was a mother who was describing when they came home, they had to take all their clothes off in the garage, put on a robe. They had to do a cleaning ritual. When they came in. There were two bathrooms in the home. They had to use one. The daughter or son, I don't remember his daughter or son used the other one. And I said something. I said, so you're not the owner of your home anymore? And she was offended. She was like, what do you mean? I pay the mortgage I own? And I said, okay, then go use the other bathroom. And she just Paused for a moment and then she let out a swing, Just a slew of swear words that I won't repeat here, and said, I'm not in charge of my house anymore. And it was this light bulb moment in discussion with her. That OCD can be, and the accommodations can be like hair growing. You get a haircut, you don't realize the next day that your hair grew, but a couple of months later you're like, damn, I need a haircut.
- [22:01]
A
Exactly, exactly. And one of the things that we've learned, or I've learned, so I co lead parent groups as well, so recognizing how much it impacts parents. But one of the factors that's so important is the parent's ability to tolerate their child's distress. And often we'll have parents who come in who have very different approaches to their child's ocd. But in both of those cases, each of the parent is having a hard time tolerating their child's OCD driven distress. So sometimes it plays out as like being heartbroken for the child, teary, trying to rescue them at any cost, trying to make any OCD symptoms stop in the moment because it's so unbearable to see them suffering. And sort of at the other end of the spectrum is being very upset seeing your child who's not acting like themselves and and wanting to say, just snap out of it, just don't do it, just suck it up and getting quite angry about it. Neither of those approaches are going to help OCD go away. What those do is they enable family accommodation and they distract from ocd. So what we try and do with our parents is try to get them more on the same page. And like I say, fake it till you make it.
- [23:17]
B
Yeah, Right.
- [23:18]
A
So in the middle of an OCD upset, rather than jumping in with accommodation or big fight starting, trying to kind of ride through it and sort of hold your ground against the ocd.
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B
OCD loves that chaos.
- [23:30]
A
Oh, it totally does. Yeah.
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B
Because then you're not focusing on ocd.
- [23:33]
A
Absolutely. That's why OCD wins in those kind of scenarios. Yeah.
- [23:37]
B
And at its worst, those are the families who get divorced or separated because they can't even agree on how to approach dealing with the child.
- [23:46]
A
Right, exactly. And it's so active, especially if it's hard to tolerate seeing your child upset and there's nothing, it's not a good or a bad thing. I think we're all biologically driven and driven in other ways about our parenting. So it's not bad if you're very empathic. And you feel your child's pain or not bad if you're distraught, if you see that they're not fulfilling their potential and you're just feeling for them. However, I think you need that awareness. And the idea is to just be less reactive with the ocd, because ocd, it loves causing a stink, creates a distraction. OCD wins. It loves the negotiating that happens. I'm sure this has happened with you many times. You've negotiated with clients about back and forth and you're distracted and next thing you know it's 20 minutes later. And OCD is one because it's like distracted you from actually taking action. So that same kind of thing can play out in families. Yeah.
- [24:46]
B
And what do you see or have you ever noticed any trends are kind of the turning points? Are there things that seem to happen in families when people hit that maybe it's the rock bottom experience or something that finally gets the buy in of maybe we need to do something different? I don't know if there are trends.
- [25:09]
A
In that or not.
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B
I'm not sure.
- [25:10]
A
I think it's so variable because you have some. We know OCD also runs in families. You have parents who are ahead of the game and they're recognizing what's happening and concerned and sometimes it's easier to believe it's something else. So there's many different pathways for people to come to us. But what we know from research is if you're able to address OCD sooner in childhood, if it's childhood onset as opposed to 10, 15, 20 years later, your outcome is going to be significantly better when you're an adult. So this is why we try and aim for not to stress people out, saying, you need to get treatment this minute. But rather than just waiting, saying, oh, it's just a phase that the child's going to outgrow, it's just going to go away. That's not how OCD tends to work. So just ignoring it isn't helpful in terms of making it go away?
- [26:08]
B
Yeah. Most problems aren't done better by just ignoring them, are they?
- [26:13]
A
Not necessarily.
- [26:16]
B
At the clinic, obviously, we're always trying to innovate and figure out new ways to motivate kids and adolescents to do erp. Take your medications on time and things and get the buy in of the family and make sure that they're not undoing the work that we're doing while we're doing our ERP with them. How do you make sure that all of that runs smoothly and maybe especially that family accommodation piece, because it's not going to be helpful if we do all this work at the clinic and then they go home and nothing's changed at home.
- [26:55]
A
Yeah.
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B
At all.
- [26:56]
A
Exactly. So, number one, everything goes perfectly smoothly. Well, all the time.
- [27:01]
B
Because you're Canadian and that's just how it goes up there. Yes. Okay. Congratulations.
- [27:06]
A
Yes. Yeah, no worries. But in all seriousness, so there's been a number of studies we've done over the years. We try and integrate studies into the clinical work that we do and learn from that and then continue on.
- [27:19]
B
So imagine. Great science. Congratulations. Yes, I love it.
- [27:22]
A
So we do group based cognitive behavior therapy, but we had noticed that things like if the child was having rage episodes or getting upset or having meltdowns in the context of cbt, that's one of the things that gets in the way. So one of the studies that we've done is doing additional family based therapy along with a cognitive behavior therapy, and that was found to be helpful. We did a study, and I'll just mention a few different ones we've done. We did one where initially we thought, okay, if we can help the child keep calm, that kind of thing, maybe we'll do some mindfulness skills training for kids. We didn't necessarily actually see much effect with the kids in our pilot study, but we did notice that the parents who had sat in on some of those sessions in the background were. Were starting to use those skills.
- [28:17]
B
Okay. Vicarious learning.
- [28:19]
A
Yeah, vicarious learning. So we did do a fairly small study that was published a number of years ago where the parents who received mindfulness based skills training, they actually improved in their ability to stay calm in those OCD outburst moments and improved their ability to tolerate their child's distress. So that was really cool because it's one thing to just talk about what the problems are, but if you can't think of what the solutions would be, then you're kind of left hanging a little bit. And then some other work we've done I think was interesting and sort of surprising. We took an international sample of kids and youth who had gone through cognitive behavior therapy. So with a lot of the big centers, and we looked at just insight. The things that when I was in psychiatry and when I learned, and what I've written in chapters, unfortunately, is that the lore is that childhood onset OCD is different because the kids don't get it. They don't think it's a disorder necessarily. They don't have insight. When we looked at the sample, that didn't seem to be the case really at all.
- [29:32]
B
Wow.
- [29:32]
A
Yeah, not at all. So about two thirds of those kids had either excellent or good insight into their ocd. And the other thing that we found, which is really hopeful, is that even the kids who had poor insight to their ocd, after they went through cognitive behavior therapy, their insight improved. Meaning that historically, people would say, well, the child doesn't recognize the ocd, so you can't do cognitive behavior therapy. It's just not going to work. And what we found in combining all of these large studies was that's definitely not the case. So it's not a reason to say a child can't do cognitive behavior therapy. What we did find, though, is avoidance predicted worse outcomes. So the more the child was allowed to avoid things in their life, avoid going to school, soccer games, all that kind of thing, that was a predictor of poor response. So beyond just the clinical outcome studies that we've done, we've also looked a bit at biology. So we know OCD is at least partly genetically driven. So we did a study where we were looking for markers of that genetic risk. And we found, we looked at kids with ocd, their brothers or sisters who didn't yet have ocd, but we knew could just by definition could develop it in the future. They were increased risk and healthy control kids without OCD in the family who.
- [30:58]
B
Were not related to that.
- [31:00]
A
That's right.
- [31:00]
B
Okay.
- [31:01]
A
And what we were looking for is, rather than just looking at the genes, was looking to see if there's something downstream a little bit, if there's something else you could look at that might pick up that the kids are carrying genetic risk. And what we found is we looked at cognition and the kids with poorer planning. So it was the kids with ocd, and the unaffected sibs who had OCD in their family were more likely to have poor planning. So again, that's maybe not directly clinically relevant, but we've kind of continued along that path to try and understand what are the underlying genetic factors. How might you apply those in the clinic? And then most recently, we've been doing a study on epigenetics of ocd. So looking at the epigenetic signature of kids with ocd versus those without, and found in a pilot finding some differences. So, meaning that it's not so much the genes that they've inherited from their moms or dads, but whether they're turned off and on.
- [32:08]
B
So that's epigenetics.
- [32:09]
A
That is epigenetics. Epigenetics, in short, sort of is not so much about the genes you've Inherited, but it's how your environment becomes embedded in biology so that through interaction with the environment, the on off status of genes expression can change. Now, very cool.
- [32:31]
B
Our audience is going to ask how do we know if a gene is on or off?
- [32:35]
A
So what we looked at is look for a methyl group. So methylation sites on something called a CPG site along the DNA all across the genome within individuals. We looked at over 600,000 of these sites within the individuals and looked to see whether there was a methyl group attached to these sites or not there.
- [33:01]
B
And what is a methyl group?
- [33:03]
A
A methyl group is like one carbon and three hydroxide atoms. Yeah, it's just a.
- [33:13]
B
And that's the on off key.
- [33:15]
A
Almost basically. If there's a methyl group that's active there, it can kind of block the road to the gene's expression.
- [33:23]
B
And what would cause oversimplifying.
- [33:26]
A
Totally. Yeah.
- [33:28]
B
It's a podcast.
- [33:29]
A
Okay.
- [33:30]
B
We don't have PowerPoint, but what would cause the methyl group to appear or not be there?
- [33:39]
A
Exactly. This is the perfect question.
- [33:42]
B
This is the question.
- [33:43]
A
So there's been a lot of epigenetic studies over time looking at impacts of adverse childhood events or early childhood events and how that impacts people's genomes. This is kind of expanding it into the world of ocd. And one of the more exciting findings that we had with our relatively small sample was looking to see if cognitive behavior therapy changed the biology of these children. We found a number of sites, 76 sites that differentiated the kids with OCD versus those without. So those on off switches were in different positions.
- [34:23]
B
76 places.
- [34:24]
A
It's 76 places of about 600,000.
- [34:28]
B
So small.
- [34:31]
A
But then the other thing we looked at is in the kids with OCD before they did cognitive behavior therapy versus after, there was one site that we saw where there was a difference. We've known for decades that cognitive behavior therapy works to treat ocd. We've known from looking at imaging studies, brain changes happen between pre and post cognitive behavior therapy. But the mechanisms for that aren't fully understood. I mean, they're understood from a psychological standpoint. So epigenetics provide an opportunity for us to take a peek into that.
- [35:08]
B
Fascinating.
- [35:08]
A
Yeah.
- [35:09]
B
Now, when you say just for our listeners, because we talk a lot about erp, when you say cognitive behavioral therapy, are you meaning more on the exposure and response prevention side?
- [35:18]
A
Yes, absolutely. So in our program, we do it's exposure response prevention based cognitive behavior therapy.
- [35:25]
B
Okay, great, great. Just in case, just for clarity, the comment, why is this? I mean, you talk about ERP all the time. So it's good. Good. I want to make sure. Fascinating stuff. And I can only imagine the amount of money it would take to have the computers to run the programs and the microscopes to look at the genes and the chemicals it takes to extract some of these things. It can't be cheap, right?
- [35:53]
A
It's definitely not cheap, no. And also it's with other genetic work that's been done. It's really been an excellent example of team science, collaborative science. So the largest genome wide association study of OCD, which was published in the last year or two, combining work of people internationally, where there was over 50,000 individuals with OCD and over 2 million controls, and it took that size to find some significant findings. So finally, after a few decades of trying to find out what parts of the DNA might there be risk conferred from towards ocd, so we've been able to find that. But again, it's been a huge degree of work. Takes a lot of money, funding to continue along these lines. But it is promising that we're finding results that seem to kind of make some sense.
- [36:56]
B
I don't know where that brings the future, but people will ask the question, does that mean we'd be able to develop something that could prevent some of those from being turned on so that OCD could never be turned on?
- [37:09]
A
I think that would be a big ask, yeah. One of the things we've learned about genetics of ocd, it's so different from Huntington's disease or cystic fibrosis, where it's all centered in a few genes. What we've learned from that huge study I just mentioned is that actually it's at 11, the findings were driven by 11,000 different points in the genome. So it's really complicated, it's very multifactorial. So it's additive, lots and lots of small risk that's added together within individuals with different combinations that confer risk for ocd almost.
- [37:54]
B
What's the straw that breaks the camel's back then? In this situation, you may have 20 of these and not do anything. But that 21st one might be the thing then that tips it over. Right.
- [38:04]
A
And the interesting part is depending what happens. So we, we know talking to people who have ocd, they're often able to tell a story. You know, after my mom died or after my child moved schools or there's often been some stressor that doesn't mean that one stressor caused ocd.
- [38:20]
B
Right.
- [38:20]
A
But it can be the proverbial straw that broke the camel's Back. So really, when we're looking at this disorder, it's very interesting to work with, but it can be really challenging because it's so what we say, heterogeneous just means so varied across individuals. So it makes it tricky to study, but not impossible.
- [38:42]
B
And that's why I think it's really fascinating what you talked about earlier, the idea of blaming the parents, because the parents will come into sessions and feel very guilty that their child has this wondering what they've done. But they can't control 100% the environment of their child. Even if they are with their children 24, 7, they still cannot be in total control of the environment of that child. And who knows, something fun for me is a stressor for somebody else. Right?
- [39:11]
A
Absolutely. And again, that's why it was so great to have this study published a year ago. Since saying how you rear or raise your child did not have any significant impact, it was more driven by the genes. So one thing I'll say to parents, if they're starting to talk about worries that they caused us, like, even if you wanted to cause OCD in your child, they were born and you say, okay, we want our kid to have ocd, let's do everything we can to have them develop ocd. No, that's not in your power. It's just. That's a great example outside of your control. But people, you know, they will worry that they're somehow responsible for it, but it's just outside of their control.
- [39:54]
B
I really hope that brings relief to families who have suffered for so many decades under. Even old for our own field perpetuated that notion for so very long. Right.
- [40:06]
A
Yeah, absolutely. And I think, and that's, I think, one of the many factors that can get in the way of treatment too, where parents may be feeling so badly, they might be feeling responsible that their child has this disorder. They need to sort of suck it up or improve something themselves. And they just may be really ashamed or embarrassed when that is. It's not the case.
- [40:35]
B
Boy, I really hope parents hear that and, and get some relief out of that experience, because that's really great.
- [40:41]
A
Yeah.
- [40:43]
B
What are you excited about for the future of the field?
- [40:46]
A
One of the things I'm excited about is bringing together the different worlds of ocd. So over the years, I've done research sort of in the psychological realm, in the biological realm, and I think sort of connecting the dots a little bit in terms of better understanding how does OCD start, How do we best treat it? And seeing groups of researchers or groups of Clinicians coming together. I have hope that this will happen and we'll recognize that it's not just a biological disorder, it's not just a learning based disorder, that really, it's such a complex condition. There are many factors that are involved which I think can translate into many opportunities to improve outcomes.
- [41:34]
B
Well, I think of the meeting you and I were just in a few hours ago where we had our scientific and clinical advisory board for the International OCD foundation filled with therapists, psychologists, psychiatrists, you know, all of these people together, lay people in the field who are just passionate about this and everyone in that room together. Just. We have one goal in mind, which is how do we help stop the suffering that OCD causes?
- [42:00]
A
Absolutely.
- [42:00]
B
Yeah. And it's a joy to be able to do that with you and to be a part of that community.
- [42:05]
A
Yeah, yeah, right back at you. It's, it's just a really fantastic group of individuals who are, I think, just really dedicated to helping people who are living with ocd.
- [42:17]
B
Yeah. How would people find your clinic or get information about you?
- [42:22]
A
I'm at, I work at the University of British Columbia, so. So I'm a professor there. Could Google me. My email is Evelyn StewartBC CA so that's awesome. Yeah.
- [42:35]
B
And thinking about just kind of a message of hope. Right. What is it that you like to give to people as they're maybe starting on that OCD journey that someone's watching this right now debating should I take this medication, should I talk to a therapist, should I do this? What is your helping get over that hump?
- [43:00]
A
Yeah, well, I think the fact that there is hope, there's so much hope and I think sometimes parents or people with ocd, when you're living in the middle of this, it can be really hard to see beyond that. So we know, even looking at data, looking at the evidence, most of the kids who have OCD in childhood don't have full blown OCD as adults. It is not a life sentence. It does not mean you're going to have it forever. Also, if you take medications to help with the OCD and you learn the ERP skills to push back, it's not that your child will be on medications forever at all. So I think we're really lucky to have evidence based, proven treatments that work and different things that we can use. In general, there's folks with OCD and their affected families. I just love working with them. Just traits overall, just very big hearted, empathetic, hardworking people with so much to give. I think really as we work together in the IOCDF were able to try and make OCD just smaller in their lives. So things won't always be as bad as it feels when you're in the middle of sort of an OCD exacerbation.
- [44:21]
B
On the flip side, are there things that people who are watching can do to contribute to genetic studies or other studies about ocd and how would they find out that information?
- [44:32]
A
Yeah, so I think so. I would say go to the International OCD foundation website. So if they're in a position where they're able to support some research, there's a great group there who run grants and there's folks from all over the world with some of the brightest minds who are submitting opportunities. Also on the IOCDF website, there's descriptions of different studies that are going on for people to participate if they're wanting to.
- [45:03]
B
That's great.
- [45:03]
A
Yeah.
- [45:04]
B
Well, we definitely hope people will do that. And Evelyn, thank you for the work that you do in the field. It's inspiring to get to work with you and your colleagues, and I'm happy to be a part of that group.
- [45:15]
A
Thank you.
- [45:17]
B
And thank all of you for watching another episode of the get to Know OCD podcast. It's been a joy speaking to my friend Evelyn Stewart today. And if you are looking for help for OCD or related conditions, check us out@nocd.com and if you like this. Well, it's the get to Know OCD podcast and you can subscribe to the NOCD YouTube channel. We hope to see you again soon. Thanks for watching.