Considering the Role of Stress in Pruritus

Rare & Resilient Webinar 1: Considering the Role of Stress in Pruritus

Rare & Resilient Webinar 1: Considering The Role of Stress in Pruritus


Tyler Bradley, Walter Perez, Video Narrator, Female Speaker, Caitlin Shneider, Emily Ventura


Emily Ventura  00:00

Thanks so much for joining us.


Caitlin Shneider  00:02

Great. Well, I am going to share my slides. I’m very excited and honored to get to be here with everyone today and to talk to you a little bit about your experiences with pruritus and to share a new perspective that I’m hoping will be helpful. So let me go ahead and share my slides. And as I’m doing that, I know that the team sent out an email yesterday about a link that I wanted to make sure folks had access to, so maybe make sure that your phone is nearby and you can access the internet just while I’m getting myself connected and settled. Can you see my slides? Can someone just give me a thumbs up? Yeah. Okay, awesome. Thank you. 


Caitlin Shneider  00:51

Alright, so I will introduce myself a little bit more. My name is Caitlin Shneider, and I am a fifth year clinical psychology PhD student at Georgia State University in Atlanta, Georgia. I am particularly interested in pediatric psychology, which is the intersection between clinical child psychology, which is things like child anxiety, ADHD in kids, depression in kids and that’s connection with pediatric medicine, so working with kids with chronic medical conditions and diseases. And so I’m interested in training to be a pediatric psychologist that works at a children’s hospital providing support to kids with chronic diseases and their families. 

I’m particularly interested in resilience, so understanding what allows kids to thrive in the context of some really difficult experiences and circumstances. And so I’ve done some clinical research with kids with type one diabetes, and with sickle cell disease. I’ve provided clinical services and done training with a number of different pediatric chronic disease groups, working on all kinds of things related to having a chronic illness, so coping with uncertainty, dealing with social challenges at school, supporting parents in the context of a chronic disease. 

And while I’ve worked with a number of different groups, I’ve actually never worked with someone with PFIC and I don’t know a ton about PFIC. I’ve done some reading, but it kind of begs the question, why am I here today, if I don’t know a ton about PFIC? So I’m a graduate student in the child health and medical pain lab. And our lab does a lot of research related to pediatric psychology, like I said, studying some of the psychological aspects of having a chronic disease and a lot of our work centers around pain, so looking at things like factors that are associated with pain, things that make it better things, that make it worse, things… interventions that are helpful for that. 

And this is important, because science has shown that the neural pathway that carries the signal to the brain for pain is the same one that carries the signal for itching. So what we know from chronic pain might be really relevant for itching and so there might be some information that I have that that could be helpful. And while I have this training and this expertise, I do not have the lived experience of what it’s like to have a child with PFIC or to live with PFIC myself. And so that is the expertise that all of you have and that you bring to this webinar series. So I think we can really work together in this way. 

And before I get started, I want to acknowledge that living with PFIC as a teenager, as a kid, as a parent of a child is extremely, can be extremely difficult, and overwhelming and exhausting and it is a lot for any person to handle. And so if you have any kind of feeling about that experience, you are not alone in that. 

There is an entire division of the American Psychological Association that is dedicated to exactly that, to supporting kids and families that are going through that. And however you feel is valid. As a graduate student without a license, I cannot run a support group or create a space for us to talk about that, as much as I would like to. And so before I get started, I want to make sure that I acknowledge and validate how hard that is and set the stage that this is really going to be informative and informational.

And we have a support group that is running and if you’re not connected to that, Emily can help you get connected to that. But I want to sort of set the stage from the beginning that this is really going to be education-based, but acknowledge that this is really difficult and it’s important for us to acknowledge that too.


Caitlin Shneider  05:08

So, I want to know who is here. So I’ve told you a little bit about me. I can’t, I don’t think I can see anybody’s faces, which is totally fine, but if you wouldn’t mind just letting me know who is here with me today. You… so if you can pull out your phone or an iPad or a laptop and go to this link here at the top, And I think once you go to that page, it’s going to ask you for your name. You don’t have to put your name.

You can just hit skip, and you can enter your responses anonymously. And then it should take you to a page where you see this question and the options and you can select what best represents you: “I have PFIC”, “I have a child with PFIC”, “I have an infant or a toddler”. Or if you are somebody in advocacy or industry, the last one probably best represents that you provide services to this community.

 And I’m just gonna give us a minute for folks to get situated with that. And if you’re having any difficulties with that, feel free to come off mute and just let me know and I’m happy to help troubleshoot accordingly. But I want to make sure that folks are able to identify who’s here. 


Emily Ventura  06:33

Thanks, Caitlin. I’ll share that I’m having some internet difficulties, so I might need an extra minute.


Caitlin Shneider  06:38

Okay, thank you for for letting me know. No problem.


Tyler Bradley  06:42

I also added the link directly into the chat for people


Caitlin Shneider  06:45

Sweet, thank you Tyler. It seems like so far, we have a number of caregivers of an infant or a toddler. Some caregivers of children. I’m gonna just gonna give it another 30 seconds or so. And then we’ll go on to the next one. Any any progress on your internet Emily? Yes? Awesome.


Emily Ventura  07:38

Tyler’s link really helped me out. I was able to get in through that. So thanks, Tyler.


Caitlin Shneider  07:43

Great. All right. So it seems like we have a number of caregivers here today, which is great. And so I think I probably know the answer to this question then, but I want to understand who’s here a little bit in more detail. So for me to understand who’s here today, if you can just share with me how old you are. So under 12, 13 to 15, 16 to 18, 18 to 25 or if you’re older than 25. I’m going to give us a minute with that. Also, it should just pop up from the screen that you were just on, so it should be easy. And I’ll just give us a minute here as well. 

And maybe since I can’t see faces, if folks are familiar with Zoom, I think there are little reactions that you can do. So maybe if you are all set, you can give me a little thumbs up or a smiley face or something just to let me know you’re not having any difficulties with it. Thank you, Walter.


Caitlin Shneider  08:51

All right. So most of us are over 25. So thank you for doing that. That’s really helpful just for me to understand who’s here. So we’ll go on and you don’t need your phones anymore. So just know there is not going to be any more polls. But thank you for doing that. So why are we having a series on pruritus? As caregivers of a child with PFIC, you live with this every day and you likely know that pruritus is one of the most commonly reported symptoms for kids with PFIC and it’s one of the most distressing symptoms. It is the most bothersome and burdensome for families. And as you know, it can have a really negative impact on just day to day functioning. It can disrupt sleep at night, make it so that kids can’t sleep, parents can’t sleep.

 It gets in the way of going to school, being able to pay attention at school, and it can also lead to harm from scratching over and over again. We also know that pruritus is associated with poor quality of life. It’s hard. And this is something that’s persistent. It doesn’t seem to lessen over time. So this seems to be a pretty large unmet need and so that’s a little bit about why we’re doing this series. And so apart from a liver transplant, we don’t yet have a cure for PFIC.

 But there might be some things that we can do to work on the symptoms of PFIC and to develop some tools to be able to cope with pruritus and with PFIC to make it a little bit easier. And so in talking about that, it’s important for us to think about that there is a connection between our mind and our body. And there is lots of data to show this. So I’m gonna ask you to use your reactions again. How many of us have ever felt like butterflies in our stomach, maybe nauseous, felt like our heart was gonna pound out of our chest when we were thinking about something like a presentation at work or having to ask for a raise from your boss or presentation at school? 

I see we might have a number of different people here today. So I see Emily raise a hand. I’ve definitely experienced that before. I’m guessing some other folks as well. Yep. There’s a thumbs up. Thank you, Walter. Yeah. And so that is evidence that the way that we think, what we’re thinking about, influences what we feel in our body, right. Our thinking influences our physical symptoms. And we can flip that around. How many of us have had thoughts or something go through our mind related to what we’re feeling in our body? Maybe something was really painful and we thought, “Ouch, that hurt. What was that?” Or we’ve had thoughts about itch like, “This is really awful. This is really uncomfortable.” Yes, another hand, right. 

So this shows that the physical symptoms, what we experience in our body, influences the way we think. And so it’s circular. The way that we think influences what we feel in our body and what we feel in our body influences the way that we think. And so understanding how our mind and our body are connected, might help us learn new ways of managing itch. So it kind of raises this idea of could interventions that change the way we think, or change the way we respond to our thinking, reduce itch. And the data are pretty encouraging. So there are a number of clinical trials that have been done to test out medicines for itch, and there is a pretty significant placebo effect.

 What does that mean? So when we do a clinical trial, typically there are three groups. The first group, if we’re testing out a medicine, the first group is the control group, which means nothing happens. You don’t get a medicine, you don’t expect to get a medicine, kind of everything stays the same. It’s what we control and what we compare things to. Then there’s a placebo group, which is a group that might get a pill, like the medicine we’re testing, but there’s no medicine in the pill. So it’s sometimes called like a sugar pill. And so the folks that get that think that they’re getting the medicine. And then there’s the testing of the actual new medicine, right. So folks get that pill and sometimes they know that there’s medicine, and sometimes not, depending on the way the study is designed. 

But here’s the placebo effect. And so what the data are telling us is that folks that think they’re getting a medicine report significantly less itch, even when there’s no medicine in it. So that tells us that the way people think about itch, and the way that they respond to itch might be really important for us to think about.

 And I think about the way we think about our physical symptoms, kind of like the dimmer on a light switch. So our thinking is part of our physical symptoms, it has an influence. So it can make itching worse, can make the room brighter, kind of like that switch that goes up. And then it can also turn it down. So it can reduce itch. But it’s not an on or off switch.

So sometimes when there’s somebody from psychology talking, folks will say like, “Oh, you think it’s all in my head like I’m I’m making this up.” And that is not what I’m saying at all. That psychology and the way that we think and the way we respond to the way we think plays a role and is a part of it. And so that is something that we can…. one thing that we can think about. 

So the goals for the webinar series that we’re gonna do over the next month are a few. The first of which is to talk about what is itching? I want us to all sort of get on the same page. There’s lots of different ways we refer to it. Why do we have it? What does it mean and what factors contribute to that experience of an itch? We’re going to talk about some ideas of new ways of coping with it. We’re going to talk about what the research says in terms of thinking and behavior-based interventions for chronic itch. 

And then we’re also going to talk about the process of finding a therapist or finding a counselor to be able to help with some of this stuff. And before we dive in, and we get started, I just want to highlight a couple of things. Over this webinar series, I’m going to be presenting information that is based on scientific hypotheses, like educated guesses, and data, both of which are published in academic journals. But I have that little asterisk next to data because this is from different pruritus groups, not specifically PFIC. So things like atopic dermatitis, psoriasis, which are dermatological or skin conditions. Burn injury often has pruritus and chronic itch.

 So the information that we have are from those groups. We don’t know yet whether the itch in PFIC is the same as those groups. It might be. It might not be, but that’s what we’re trying to understand and research right now. So I’ll present a lot of different ideas in the webinar. At the end of the day, you know yourself best and you know your child best. And some of what I might present might not be relevant for your family and you might say, “That is not going to work for us.” And that is totally okay. 


Because I don’t know your family, I can’t give individualized recommendations about ways that I think this could be helpful or ways I might tailor it based on what’s important to your family, or the way that your family has certain values. And so that’s something to keep in mind as well. And sort of getting to that, as much as I would love to be able to offer support to each and every one of you individually, I am not your therapist, which means that I can’t provide services to you directly. I can’t provide a consultation or offer an opinion on something or do therapy or crisis management with you all. But I’m going to talk about how I can help you find somebody that can do that for you. 

And the last thing to touch on is just like medicine is, providing psychological services is an art. It’s… if you find a therapist after this webinar, or if you have one now and they say something a little bit different than what I say, that doesn’t mean that it’s wrong, or that it’s bad. There are lots of different ways to provide services and different isn’t better or worse. It’s It’s just different. So I want to make sure that we’re all on the same page about that. 


Caitlin Shneider  18:05

So we’ll get started and jump into some of what we want to talk about today. As I’m going through this presentation, if something doesn’t make sense, please feel free to unmute and just say, “Hey, Caitlin, that I don’t understand. Can you explain that again?” I I want for this to be a place that folks feel comfortable to jump in and ask questions and I want this to be informative and helpful. And so if you don’t understand it, what’s the point of us doing it?

 So please feel free to let me know if stuff doesn’t make sense. So let’s let’s get on the same page together and start with the three terms that we probably use interchangeably: pruritus, itch, itching, itchiness and scratching. They mean different things. And it’s important for us to understand how they mean different things. So pruritus is a biological process that happens in our body under our skin. And one of the symptoms of pruritus is itch or that itch sensation that we feel in our skin and that leads to scratching, which is the behavior that comes after itch. 

And so what I’m going to try to do is stay away from the term “itching” because I think it can get confusing, whether we’re talking about itch, or whether we’re talking about scratching. So we’re gonna say “itch” is the sensation in the skin and “scratching” is the behavioral response to that. So why do we experience itching? It’s not super well understood in terms of the mechanism of why that’s happening and clinical research is still trying to understand that. But we’re gonna watch just a little bit of a video that can help us understand this more.


Video Narrator  19:47

The itchy sensation itself isn’t yet fully understood. In fact, much of what we do know comes from studying the mechanics of itching in mice. Researchers have discovered that itch signals in their skin are transmitted via a subclass of the nerves that are associated with pain. These dedicated nerves produce a molecule called natriuretic peptide B, which triggers a signal that’s carried up the spinal cord to the brain, where it creates the feeling of an itch. When we scratch, the action of our fingernails on the skin causes a low level pain signal that overrides the itching sensation. It’s almost like a distraction, which creates the sensation of relief.

 But is there actually an evolutionary purpose to the itch or is it simply there to annoy us? The leading theory is that our skin has evolved to be acutely aware of touch, so that we are equipped to deal with risks from the outside world. Think about it. Our automatic scratching response would dislodge anything harmful that’s potentially lurking on our skin, like a harmful sting, a biting insect, or the tendrils of a poisonous plant. This might explain why we don’t feel itching inside our bodies, like in our intestines, which is safe from these external threats, though imagine how maddening that would be. In some people, glitches in the pathways responsible for all of this can cause excessive itching, that can actually harm their health. 


Caitlin Shneider  21:30

All right. So what can we take away from that video? As I mentioned, we’re still learning about exactly what happens in the body when somebody experiences an itch. But what we know is that it’s important. There’s a reason that we’ve continued to itch over time. It usually tells us that there’s something that might be harmful on our body. And that itch tells us to scratch, which hopefully removes whatever is harmful. But it’s complicated. And as you can see on the slide, there’s a lot more involved than what they presented in the video. 

That’s kind of a boiled down, simplified version of what this process looks like. And as we’ve talked about, and as they highlighted in the video, there seems to be some, some relation between itch and pain. And some of what we know about itching, we might be able to relate to what we know about pain. So for kids that experience chronic pain, the science has shown that they have almost like overactive or really sensitive nerves that keep sending pain signals to the brain, even though there’s nothing there. And so when I talk to kids with chronic pain, I often use the analogy of like a broken alarm clock. So when the alarm goes off, we hit it, we get up for the day, and we move on.

 But for kids that experience chronic pain, their pain signal is like that alarm and it’s broken, it just keeps going off. So we’re already up, we’re already dressed, we’re already halfway out the door to work, but the alarm keeps going off. And so it might be similar for kids that experience chronic itching, chronic itch. So what are the factors that are associated with itch? These are the ones that are I think are more commonly known. There’s a moderate amount of evidence to show that disease severity is associated with more itch frequency and intensity, skin dryness, sweating, these kinds of things.

 But what about the mind-body connection that we were just talking about and how does that fit into this? So I want us to look at this. And this is what we initially started with, talking about pruritus which is that the biological processes that are happening in the body, which leads to itchiness, right, that sensation in the skin. And that leads to the behavior, the scratch. So there are mainly three other factors that are associated with the mind-body connection that also play a role in this: biological factors, psychological factors and behavioral factors. And they are acting like that dimmer on the light switch, and they are impacting the way that itchiness shows up. 

So pruritus leads to itchiness. And the biological, psychological and behavioral factors influence how much itchiness we see. And the same thing is true for the way that itchiness leads to scratching. Biological, psychological and behavioral factors influence how much scratching happens. And so if we think about ways that we could intervene, knowing this, a lot of clinical trials are being done to target this, pruritus. They’re looking to just get rid of this process altogether, which cuts out all of this.

No itching, no scratching, nothing. Other medicines are being developed to try to block the itch signals going up to the brain and so they’re targeting that part of this process. And what a psychologist or somebody with this training could work on is targeting these things: biological factors, psychological factors and behavioral factors, including scratching to be able to reduce itching, or the intensity of itch. So what are these factors? We said, there are some biological factors that influence our experience of itch. 

We know that there are individual factors that are specific to each person. So kind of like pain, if we were to get three kids and give them the same pain stimulus, which is a very scientific word, but the same thing that’s causing them pain, they would all experience it differently. One kid might say that was super painful, a 10 out of 10. One might say that was a one out of 10. And it’s the same for itching. There are individual factors that influenced the way that they experience the world around them and the sensations around them, specifically, touch. We also know that exposure to allergens is something that causes inflammation in our body. And whenever we have inflammation, that is sending itch signals up to our brain. So that is one thing that influences and increases the amount of itch we experience. And stress. 

There are biological processes that happen when we are stressed. And maybe we can use the little reactions again. How many of you have heard of the fight or flight response? I’m guessing a number of us have heard that. Yeah. So that’s not new to us. And we think about that kind of like, if we were to encounter a bear on the road, we either are going to fight this bear, or we’re going to run away from this bear and so our body has to respond accordingly.

And so all of the systems in our body that are needed to do either of those will turn on. So like our heart rate will be faster, our muscles will tense to to get ready to run or to fight. Our breathing is going to pick up. And so when that happens, which is this autonomic nervous system, when that turns on, the mast cells, which are certain types of cells in our skin, turn on, and that increases the itching signals that gets sent to the brain.

 We also, when we have a stress response, that fight or flight response, have something called the activation of the HPA axis, which is something in our brain, the hypo hypothalamic pituitary axis, I think. A certain part of the brain turns on and it produces certain hormones, including cortisol and cortisol leads to inflammation. And when inflammation happens, more itch signals get sent to the brain. So we know that when we are stressed, there is a biological part of this that increases the itch intensity and frequency. We also know that there are psychological factors that influence this, specifically the way that we think. 

So there is data to show that thoughts that emphasize the negative parts of itching, which are very normal and common, like feeling helpless in the context of itch, or worrying about itch, increase the frequency and the intensity of itch. And there’s data to show that thoughts that reduce the negative parts of it, like acceptance, saying, “This is a part of my life. I can live with it”, decreases the amount of itch that we experience and its intensity. There’s also data to show that affect is associated with it, which is kind of like emotions. So negative emotions is associated with more itch, as well as awareness to the present moment.

 So when we’re not mindful, or we’re kind of on autopilot, like sometimes we are at the end of the day, checking our phone, cooking dinner at the same time, telling the kids to go get changed, wash their hands, when we’re not aware, that is when itch is more common. And so it’s the same for kids. And here it is, again, stress. There’s a lot of data to show that psychological stress is associated with increased itch.


Caitlin Shneider  29:28

And then we can talk about behavioral factors. What are those? And scratching is one of the biggest ones, so we’ll talk about the scratch-itch cycle. When, as we’ve talked about, when we have that itch sensation, it leads us to scratch. And scratching is typically an unconscious, almost like automatic, response that our body does. And when we scratch, it leads to barrier damage on the skin. Whether it’s drawing blood or not, any kind of scratching is leading to barrier damage. When that damage happens, it increases the amount of itch signals that are sent to the brain. And that means there’s more scratching, more barrier damage, and we just go round and round and the cycle continues. 

And as the cycle continues, there is a decrease in a certain chemical in the body called PGD2, prostaglandin D2, which is an itch inhibitor, so that means it makes itching stop. So as the cycle continues, we don’t have as much that’s preventing the itch, which means itch is increasing, as the cycle is continuing. And here it is again. Stress plays a critical role in this and it only exacerbates this cycle to continue. And stress decreases the recovery ability of the skin. And so it just further drives the cycle, because stress is interrupting the ability of the skin to recover

. So it’s driving more itch, more scratch, more barrier damage, more itch, more scratch more barrier damage, and we just get stuck in this cycle. So scratching is something that makes itching go up. And there are a couple of other things that are associated with increased itch, one of which is increased attention. And this is really similar to what we see working with kids with chronic pain. Oftentimes, when your kid is itching, we immediately want to care for them. And so out of love and care, as a good parent, we go over and check on them and ask if they’re okay, and what do you need and don’t scratch and we give it more attention and it’s out of a place of love. And data have actually shown that that makes itching go up, is giving it more attention. 

So we’re going to talk more about that in the later part of the webinar series. But it’s something to just keep in mind that oftentimes actually giving more attention to it leads it to go up. And changing activities or stopping activities in the context of itch is something that can make it increase in frequency and intensity, because distraction is one of the things that helps us take our mind off of the itch. And so by stopping activities and doing nothing, it means we have more time to give to the itch sensation. So all of those are associated with increased itch intensity and frequency.

And so we’ve talked about the biological factors, psychological factors, behavioral factors, but they’re all related, as you probably know. And so I want to just walk through an example so we can see how they all fit into each other and how they all feed off of each other. So let’s say your child says, “I feel itchy”, so they have the itch sensation. So pruritus has happened, one of the symptoms is that itch. And maybe your kid has the thought in their mind, “Oh my gosh, this is so much worse than yesterday, I can’t handle this.” So that’s a psychological factor, right? 

That’s a thought that’s going through their mind. And now they’re stressed, so their fight or flight response turns on. So heart rates going up, their breathing might quicken and they might start sweating a little bit. And other parts of the stress response turn on, so those mast cells in the skin activate, cortisol is produced, all of that is leading to inflammation. And that means more itch signals are going to the brain. So those are the stress response, so those are the biological factors, so that means more itching. So then maybe your kid has the thought, “I can’t stop scratching. This is never going to stop. This is the worst.”

So that’s a psychological factor, which means now we’re scratching harder, right? They might start bleeding. So the scratch is the behavioral response, the behavioral factor, which makes itching go up even more. You notice the bleeding and you go over and you say, “Are you itchy? What do you need? Try not to scratch.”. That is a behavioral response to the itch.

 And then maybe your kid has a thought, “What am I supposed to do? I can’t stop thinking about how itchy I am.”, another psychological factors. So they’re all interwoven, psychological, biological, biological, triggers, psychological behavioral, they’re all interrelated. And we can look at each of these in the context of this little model, if you will, and see how they fit. So again, we have the pruritus leading to the itch, which leads to the scratch and these biological, psychological and behavioral factors are influencing how much itch shows up, and how much scratching shows up. And this is where we could intervene and that is going to be what our webinar series is really focused on. 


Caitlin Shneider  35:08

So, as an overview, we’ve talked about the biological, psychological and behavioral factors. Some of these, we can’t change. You can’t change the severity of the disease, can’t change individual factors about your kid. But look at how many we can change. There’s a lot. And notice how many times stress appears across these. So that tells us that the biological, psychological, and behavioral impact of stress is associated with more frequent and severe itch. And this is actually very similar to what we see in other pediatric chronic disease groups that have chronic pain. It matches very similarly. So kids that experience unexplained chronic pain, pain in the context of sickle cell disease, pain in the context of gastrointestinal disorders, stress has been shown over and over again, to exacerbate pain. So it’s a way in which it’s very similar.

 And so this makes me think that this is a good place for us to start is to identify the role of stress and develop some strategies to be able to manage stress. So this is an overview of what our webinar series is going to cover. Today, we talked about the role of stress in pruritus. And next week, we’re going to talk about tips for managing stress. So talking about the foundation of stress management, and specifically talking about certain skills and tools that you can use to manage stress

. Again, it’s going to be designed primarily for adolescents and young adults and parents. I’m also going to give some strategies for younger kiddos that you can take if you have a younger child at home. And then the next two weeks, we’re going to focus on changing our thinking and changing our responses to our thinking. So this next one is thinking about thinking, which is the psychological factors we were talking about. And then evidence based interventions for chronic itch, which I will, you know, give away the the punch line, which is going to be pretty behavioral, of changing the way we respond to itch. So again, all of these are going to be working on this dimmer switch, trying to reduce the amount of itching, or the amount of itch sensation that your child feels

. And then the last session will be about how to find therapists, how to find somebody that can help with this. It is much easier said than done to present this information and say, “Oh, yeah, I’m gonna go home and I’m going to implement this.” It’s hard to do. Sometimes, especially with young kids, it can be challenging. And so working with somebody that has training in this is something that could be helpful to implement some of these skills, and to specifically work with your family and tailor it to your family. And we’re only touching on pruritus in the context of this webinar, and there are so many other parts of living with PFIC that are hard. 

So being able to get support from someone might be helpful for some of that as well. So we’re going to talk about the process of finding a therapist, questions to ask, what kinds of therapists are there, a bunch of stuff related to that on this last one. And so, as I said, next week is really going to be dedicated to stress management. And we’re going to start with the foundation of stress management, and then talk about specific skills.


Caitlin Shneider  38:49

And so that is what I have planned for today. I am happy to take questions. I’m mindful, it didn’t take the full hour. So we can always give that time back to you. But I want to make space if there are questions that folks have. I’m happy to take them or answer them.


Emily Ventura  39:07

Thanks, Caitlin. That was wonderful.


Emily Ventura  39:14

Thank you all kind


Emily Ventura  39:15

of pause. I always have questions. But I’m going to kind of pause and see if anybody else has questions. For Caitlin, will we have some time


Caitlin Shneider  39:29

and feel free to put them in the chat as well.


Emily Ventura  39:35

Join us at this webinar will be available for viewing before next week. So we’ll make the audio transcript available and will provide us a summary of the session. And we’ll make that available on our website and share that link and it can be shared broadly past that.


Caitlin Shneider  39:53

Nice to see your faces. I know there are a couple of folks with cameras on and in the virtual world, I love getting to see faces so thank you for turning your camera on.


Female Speaker  40:02

Well, and if nobody else has a question, I’m gonna ask. I’m from oh…it doesn’t say. I’m from PSC Partners, who also experiences itch. And my question was, it sounds like and again, I apologize because I came in late, it sounds like so much of this is appropriate, both for pediatrics as well as adults. Am I wrong?


Caitlin Shneider  40:30

No, I would say that’s definitely true. I think the the tailoring of it to children is different, obviously, than in working with adults, but I would say this is true for yes, both kids and adults.


Female Speaker  40:44

And this is a family affair.


Caitlin Shneider  40:49

The experience of the itch for the child?


Female Speaker  40:53

Well, I mean, the whole….. the big picture. Yeah, because I mean, well, it’s miserable. Totally miserable. And I’m sure so many of them don’t understand it at all. And then the…. all of this interactions…so that’s where I got my “family affair”.


Caitlin Shneider  41:15

Yes, I think you’re hitting the nail on the head that yes, it is a family affair. And part of what we’re going to talk about is the role that parents play and the way that they can help shift some of this. And especially for young kiddos that can’t do the thinking about thinking and we’re going to talk about that, that’s more for teenagers, it’s going to be a lot of parents and parent-led change and behavior change. But yes, parents play a really important role in all of this. And part of what we’ll talk about is the relationship between the child and the parent and how it ping pongs, sort of back and forth.


Emily Ventura  41:57

Yeah, and I mean, I’ll just, you know, my response as a parent, is just thinking, like how much of this, of what we’re going to kind of learn in this series, is going to be me learning to change my behavior. And maybe those around me, like, not even me as a parent, but maybe you know, her grandparents or friends, if you will, you know. It’s a lot seems, you know, just approaching this as a change of behavior for all of us, going to your point of “family affair”. It might look different to each party, but it does seem like that’s going to be one of my biggest takeaways is just changing my behavior so that I can influence my daughter’s behavior.

 So that, from my perspective, I’m really excited about that. And Caitlin, I kind of have a question…or just a thought, really, because we were talking about the cycle: pruritus creates itch, which leads you to scratch. And then part of the behavior seems like a goal is to break that scratching behavior.


Caitlin Shneider  43:08



Emily Ventura  43:09

One thing I wrote down was, you know, scratching provides a sensation, right? When you scratch, it provides a sensation. 


Caitlin Shneider  43:15

Mmm hmm


Emily Ventura  43:16

But I’m curious.  I don’t know what the direct question is, but you know, oftentimes, I find myself putting a barrier between the scratch and my daughter, so keeping her covered so that she can’t break her skin. I’m wondering if there’s any relationship between the sensation that scratch gives and the actual physical, physiological need to scratch? Does that make sense?


Caitlin Shneider  43:42

Yes, I think that that is very related to what we’re going to talk about. And I think…..I’m not I’m not sure from a physiological standpoint, because that is not my area of expertise. But I do think that replacing that behavior has been shown to be very effective. And so that’s part of what we will talk about and one of the webinars is called “Habit Reversal.” So it’s, instead of scratching, we’re going to do something else, and it’s going to replace that behavior. And that’s, I think, exactly what you’re talking about is even though you’re covering up that area, giving giving her something else to do instead of scratching and we’re going to talk about like, what ideas of that might be. But yes, I think I think you’re exactly right.


Female Speaker  44:47

I may have made up my own word, acclimatization, but being acclimated to itch, I know that…so my son was my son was a kid when he was diagnosed, and now he’s 32 and I just….and he is living with me again. And he, he walks around, you know, every room has the, you know, scratcher snd he walks around and I say, “Is today worse?” and he’s like, “Huh? Totally.”


Caitlin Shneider  45:22



Female Speaker  45:22

Is that unusual?


Caitlin Shneider  45:24

No, that’s very common, very, very common. And the first part of what we’re going to talk about, is developing awareness. Because as we talked about, that scratching response is almost unconscious sometimes. We don’t even notice that we do it and your kids probably don’t notice that they do it. And so the very first part of that is noticing that I’m scratching, to be able to change it and replace it with something else. But that is not uncommon, that they don’t even notice anymore.


Walter Perez  46:02

I just wanted to add, and say, Thank you so much for pointing out the thought process behind how your thinking really affects all this. Because as as much as I agree with Emily in the behavioral aspect of it, it all starts with a thought. And I do it….yeah, it just kind of a light bulb went off on how much that is the route to helping move the rest of the party along right. 

And I remember when my son, because he’s on a trial and so he stopped scratching, but you would we would be we were accustomed to seeing him so we would catch it or watch it and go, “Wait, is he actually still itchy?” or, but he was in that habitual practice, right of just doing that. So he, I think had to kind of get trained to think differently that he actually wasn’t itchy. But then for us as well to realize, actually, no, he’s not. We’re just he’s been transformed. But anyway, I just want to point out and say thank you so much. That was a very powerful.


Caitlin Shneider  47:00

Absolutely. And it’s it’s really a specific interest of mine. I did my master’s thesis looking at something called pain catastrophizing, which is like anxiety related to pain and it’s your point. It’s the way we we think about what we’re experiencing. So kids that magnify their pain, they they feel helpless in the context of it, they feel like it’s never going to end, have not surprisingly, worse outcomes and it actually makes their pain worse. And I also looked at the parent response and ways that parents helped that or maybe hurt that process. And it’s, it’s to your point, the way that we think about what’s happening in our bodies plays a big role in how that symptom presents. Does it get bigger or can we make it smaller? So, absolutely.


Emily Ventura  47:52

Well, and then it sounds like we as parents, we, you say that the itch, you know, the person itching might not even know that they’re itching. But we as parents see that and respond to that and we’re stressed because we’re watching our child itch on a day to day. But our response, our reaction, they might not even realize what we’re doing until we react and then we react, and then they realize what they’re doing and then it makes them worse. And we’re all human, so I mean, I’m not gonna say that my my, my, I would ever go back in time and say, I can’t react to the itch because it’s devastating. But I can definitely be more thoughtful about in those moments, like, “Okay, like, my response plays a role in this” and I have to remember that.


Caitlin Shneider  48:40

And as you say, it’s, it’s much easier said than done. It is not, it’s not as simple as just changing the way you respond, because it’s hard to watch your kid do that. And so that is also something to think about when we talk about the process of finding a therapist and finding support for you all. I think as we’re pointing out, parents play a huge role in this. And so making sure that you’re okay, and that you can cope with this will help your child cope with this. And so every time that you invest in yourself, and caring for yourself and managing your own stress, you’re also investing in your kid and so that’s something to keep in mind as well.


Caitlin Shneider  49:20

Good point. Thank you. 


Caitlin Shneider  49:24

Great questions. 


Emily Ventura  49:28

Any other questions for Caitlin for this series? I know we still have four more slots with you, so there’s more opportunity. And I think you know, if anyone if a question comes up in between, we can always email you and you can have it prepared for next time or respond, so yeah, that door is open.


Caitlin Shneider  49:49

Absolutely. And just in case it’s helpful to mention we’re hoping to send out a little survey after so you can let let me know what your experience was, just so that I can tailor the next several sessions to be most helpful for you. So if you wouldn’t mind just giving us a little bit of feedback about whether this was helpful, made sense, didn’t make sense. It’ll just let us know how we can best tailor the remaining sessions.


Emily Ventura  50:18

Sounds great. Well, thanks, Caitlin. We’ll, we’ll get a summary together and we will post it on the website. We’ll get the audio transcript up and we’ll send the survey out. And then we’ll see everybody next week. I’m really excited to dive in. So thanks so much, Caitlin, again for your time, and we look forward to seeing you next week. 


Caitlin Shneider  50:42

Me too.


Emily Ventura  50:46

Thanks for joining

For Rare Disease Day 2023, we offered a webinar series called “Rare & Resilient Resources: A New Perspective On Coping With Pruritus”. This is the first webinar in the series. This installment discusses the role stress plays in pruritus and how the mind and body work together.

Webinar Overview

Pruritus is distressing. It has a negative impact on daily life and can lead to self-harm. There is a large unmet need in the area of managing pruritus. This webinar series offers a new approach to the way that we view pruritus. This is a 5-part webinar series that will offer tools to cope with pruritus. These 5 webinars will be hosted by Caitlin Shneider.

This first webinar covers the mind-body connection. This connection tells us that the way that we think influences our physical symptoms. Conversely, our physical symptoms influence the way that we think. Understanding the way that our mind and body are connected suggests that interventions that help us shift 1) the way that we think about itch and 2) the way we respond to itch and our itch-related thoughts may shift our experience of itch. Secondly, this webinar highlights the shared neural pathway for pain and itch signals, which suggests that what we know about chronic pain might be relevant for chronic itch. Find the full session breakdown on our blog.