Taking Back Control over Trichotillomania

By: Hair Loss Solutions TV™

Dr. Renae Rainardy is a leading expert in the field of Trichotillomania. She helps us dive further into the condition to understand its causes and treatments. If you have the urge to pull your hair you're not alone. And today with me is a wonderful psychologist that specializes in those very issues of helping people that have that compulsive disorder and need help. So without any further to do, Doctor we are just so excited to have you here. From ABC to, you know, Good Morning America, you're on every broadcast system because this is a major issue, which is Trichotillomania. Kind of introduce yourself to the audience and let them know how you've got into such a specialty, such a, such a focused specialty to help people's behavior in this condition that they're actually scalping their hair and pulling their hair.

Tell us about your background that got you to this point. Yeah I'd be happy to. Thank you. So I've been treating Trichotillomania and other body focused repetitive behaviors for about 17 years. And I found myself treating trich and other conditions as a result of treating obsessive-compulsive disorder. Some of the early research on Trichotillomania is linked to OCD.

We now know that Trichotillomania is a separate condition from obsessive-compulsive disorder, but they're oftentimes still associated. And it's so devastating when someone goes through this. In fact, so many of the patients that we see don't even know when it starts, that they have this compulsive disorder, and it can progress. There's an audience that are listening to us that are so sensitive to this issue.

Both parents, that they have children that have going through this. Adults, I'm going to tell you about a couple of my cases that are just absolutely wonderful. We've just done a live interview with them like this. And they told their story, you know how compassionate that is. And it's generally held behind closed doors because there's such an embarrassment and an unknown.

Taking Back Control over Trichotillomania

What, what do you see the age bracketing of this kind of disorder in your practice? So with Trichotillomania, first of all it's an incredibly common condition. One out of twenty-five people struggle from compulsive hair-pulling, to a clinical level. So that means significant hair loss is causing emotional difficulties for people based on the amount of hair loss that they're experiencing.

Or the time that's lost to this behavior too. It's not uncommon for people to spend several hours every day engaged in compulsive hair seeking and hair pulling behaviors. So while it's so incredibly common very few people actually talk about it.

And a lot of women and girls are masters of disguise, so it's something that a lot of times other people don't even recognize it. I've had clients that they've been married for 30 years and they've always worn their hair in a bun on top of their head and their husband's never knew that they had Trichotillomania. They weren't observant enough I guess to not notice differences in hair styles. That happens, that happens. To hide that. But it is something, that it is a serious condition.

About 50% of the time with Trichotillomania we do find co-morbid conditions like depression and anxiety as well, substance abuse. So those are the top three most often linked to body focused repetitive behaviors. And I want to talk about that as is well in a little bit more detail, but first let's go to the level of degree. There's degrees of this that I have seen in my patients where they can just be twisters, you know, they're just literally twisting. Many times what we've done is we've actually made them a ponytail on a keylock and let them play with that and it's helped some of them.

Then there's that extreme case where they hit a site, and of course it be their eyebrow, it can be the top of their head. But I find that they go to a site and it becomes almost their place and they may leave it alone, the rest of the head. But then there's the one that can actually scout their entire head sometimes long-term tramatizations of the follicle and baldness.

What it what do you see in the in the numbers of the percentages of that kind of degree of difference? Well we don't have the data on that quite yet, for severity. We do, we do know again how prevalent Trichotillomania is. When we look at different sites in which people pull from, we do find a scalp to the most common. Scalp, eyebrows, eyelashes, pubic hair, leg hair, arm hair, it's kind of how the breakdown falls. Now when it comes to severity, yes there's a huge continuum, from hair stroking behavior, hair twirling behavior, like you were mentioning, all the way to individuals who pull every single hair on their body. So scalp, eyebrows, eye eyelashes, all their body hair, which of course takes many many hours each day. And results in other difficulties as well. So yeah, it does really variance in how severe this condition can become.

We also know that it varies on age too. Typically with Trichotillomania, we see the onset kind of in that pre-puberty stage. So between nine and thirteen is where we are most often to see Trichotillomania start in females. For males it tends to be a little earlier, but something really interesting happens with Trichotillomania. It's about equal in boys and girls. However when the individuals reach puberty, it becomes about 90% prevalent condition for women and the guys kind of drop off and that's where the women really pick up on that. And that's where we look at some hormonal factors that might be involved with this condition as well. Well on the Hair Loss Solutions TV program that we, you know, interview so many different wonderful experts like yourself, we want to bring some you know some good news to people that are going through this.

And I find that what I want the parents to hear, of so many of the younger population that we service, and I'm sure you are, get very frustrated with regards to the relationship of saying stop it, you know, just stop it. Or just take a valium and you'll feel better and you forget about the issues. It's not that. It's truly a disorder that compulsively they many times don't even know they're doing it.

I know I've got some that do it in their sleep. They're completely unaware and others that are actually getting sensations. Tell us about the two types of sensations or three types of sensations, being the pulling sensation and that, that effect that they are kind of getting a reward from.

Give us a background for people that are listening. Absolutely. This is where as researchers and clinicians we're really developing an effort called precision medicine. To try to determine the reasons for why people pull. We do know that for a number of individuals there's a genetic predisposition and when we do studies looking at genetic studies, twin studies, so when we look at monozygotic or identical twins, versus dizygotic or just fraternal twins that are no more alike others than being born at the same time than other siblings, we do find a higher rate of Trichotillomania with the monozygotic or identical twins. Which gives us further evidence for the biological nature behind Trichotillomania.

There's a lot of people looking at this and studying it in animals. All critters that have fur, hair, engage in this behavior, feathers. Parrots, it's not uncommon for them to pluck out all of their their feathers when they're put under stress. So we look at kind of this perfect storm that happens for a lot of people, given a genetic predisposition. What might also be adding stress, adding some hormonal changes, possibly some nutritional elements that may be involved too. It kind of unlocks this genetic code for people who may be predisposed to develop these behaviors. So it is very biological in nature.

We're trying to get a better understanding of that because that's important in order to prescribe medication or supplements that might be helpful in changing the biological mechanisms with this disorder. As I said at the top of the program, you're not alone, for those people that are going through that. What is the number in population that they've estimated that are in some stage of tricho, in process anyway? So when we look at prevalence rates it's anywhere from two to six percent of the population, which comes down to be about 1 in 25. In the 17 years that I've treated this condition the prevalence rate just keeps increasing. That doesn't necessarily mean that the condition is becoming more prevalent necessarily, but that more people are starting to seek treatment. They know that they're not alone and it's through organizations like, the TLC foundation for body focus repetitive behavior, who by the way does all of the research pretty much on trichotillomania and skin picking disorders, excoriation disorder as its called.

Without this organization there would be nothing. There's actually a conference coming up to which I can talk a little bit more about later, at the end of April in St. Louis. But it's a fantastic opportunity to meet the world's leading experts in trichotillomania and other be BFRB's, body focus repetitive behaviors.

There's another organization called Heart and Soul Academy which has a retreat coming up in Colorado this September. That's another great resource for individuals too. So both of these organizations are for the medical practitioners or for the consumer that would have this issue? It's both. So the TLC foundation for BFRB's, their website is bfrb.org and they have a number of great resources on their website. They have great articles. They have resources for therapists. There's resources for hair salons as well where people can get listed if your hair salon is trichotillomania friendly and you know about trichotillomania.

You can have your resources on their website as well. They'll also send information. It's very helpful for consumers, people who are experiencing this behavior themselves or their child is experiencing this behavior. It's an amazing community it's more like a family than a conference.

That's what they need, they really need that. I'll be sure that we put that in the show, know it's available, to be able to reach that information or find that, that outreach is there. I actually knew of the one, I didn't know both. I'm really excited that it's for you know for everybody because they need to have a source to go to, at least like you said, you're finding the population increasing, not because just the compulsive disorder has increased, but more or less they're coming out of the closet. They're coming into awareness. Which you know, awareness is 90% of the solution. Once we get enough back data right? And that's such a healing thing when people come into my office and I know about Trichotillomania.

I can talk to them about, oh when you pull the hair do you ever, are you interested in the hair root, do you ever bite the hair root off? People are like what? You know about that? Other people do that? It's not just me? Wow! And that's incredibly healing just that aspect of it alone. Just to decrease some of that shame and guilt. It's different with other forms of hair loss when people have Alopecia or they're undergoing cancer treatment, don't get me wrong, it's horrible to lose your hair under any circumstance.

But with Trichotillomania, when you're doing it to yourself, is what it feels like anyway, it creates so much more shame and secrecy that people do not want to disclose this. Especially for individuals who are pulling from their bikini area. They'll sometimes avoid medical doctors. People aren't going to the eye doctor, they've never had their hair professionally cut in their life because they're so ashamed to go in and have somebody notice a bald spot. Or trying to figure out, you know, what kind of story can I come up with this time to tell my hairdresser. So, it's something that creates a lot of difficulties and a lot of shame for individuals. So for them to know that they're not alone, that if they could just stop, they would have when they were 12. Sure, absolutely.

That it is a biological condition, it does require a comprehensive approach, and there are some really good treatments available and there's some brilliant researchers and clinicians working on improving those treatments as well. You know, and one of the interviews that I did for our Wigs for Kids organization, which is a non-profit to take care of children with hair loss. And one of the young ladies who had Trichotillomania made a statement in one of the interviews that actually spellbound all of us. She said, when kids started to bully her, because they said, if you had cancer it wouldn't be your fault that you're losing your hair. You pull your hair out, so you're weird. And she, it was just heartbreaking it's on our it's on our sight, wigsforkids.org. But the important part was that we were able to help her situation by applying a hair system, a sophisticated prosthetic that allowed that site to be no longer attended to by pulling. We attach it with safe attachment systems, medically approved and dermatology approved and it, over two and a half years, but it literally broke the compulsive disorder and she was able to come out of the hair system.

Because we actually have it so that we can open it up and she can get the hair growing. And they don't, once they kick that habit, so to say, we had tremendous success. Not one hundred percent... Sure. Another young girl was you said nine years old she was the worst case we'd ever seen, easily. We have never found, except for one percent that we'll ever pull the hair system hair.

Yeah. Maybe the feeling, maybe the relief of having hair, but Dr. Brett is amazing. This one pulled even the scalping of the hairpiece, but we kept working with her, and we found in our local area in Cleveland a psychologist that really, like you, have a passion to help them. And in three and a half years she went back to school, she was being home-schooled, she couldn't deal with it at school, having a head of hair.

Yeah. That's the greatest celebration of all. Your practice, what do people do in your practice that you help them through this process. Is it counseling? Is it online counseling? What is it that you put together for them. So it is a comprehensive model. So and so, for some individuals like you're mentioning, just having that blocker, having a hair system that can cover the area that they're pulling from helps to break that pattern of behavior that's developed. So when they can't get at the scalp and for them, it's all about the sensation of pulling.

When they can't get that sensation anymore, the Trichotillomania goes into hibernation, okay? So for other individuals the blockers are not going to be enough and that's where you'll see people who do pull from their hair system, pull from their pets, pull from other people, pulled from their dolls. And that's where it's more than the sensation for them. For those individuals it might be more about playing with the hair afterwards. Putting the hair in their mouth. Trichotillomania can become dangerous when people are ingesting the hairs. It can create a medical condition called a trichobezoar, which is basically a hairball in the stomach that cannot be digested. That can be life-threatening so if your child or if you or your client is ingesting long hairs, they do need to go in for a medical appointment just to make sure they don't have any intestinal blockages.

That's just kind of a safety aside message. For other individuals their Trichotillomania serves the function of emotional regulation. In those cases we'll work on skills like cognitive restructuring, relaxation strategies. For some people it's about perfectionism that they pull out all the hairs that are different. That hair is white, that hair is darker, that hair is more coarse, that hair is shorter, that eyebrow is pokey. And that's where people will pull due to perfection.

Then we work on the perfectionistic thoughts that we're having. We might also do what's called an exposure approach. Just like helping somebody overcome a phobia, if I'm working with somebody with a spider phobia, I'll draw like a little like tiny sketch of a spider.

And then we work up to the, you know, 12 inch National Geographic, you know, spider. We do the same thing for imperfect hairs. So I'll draw a little sketch of somebody with a little zanie hair poking out the stickman, right. So if for some people with Trichotillomania, that can be really stimulating to look at. And with the repetition of look at it, look at it, look at it, eventually the brain gets bored.

Eventually they can touch those different types of hair on their head without having to pull them. That it isn't so exciting anymore to their nervous system. This process of habituation has taken place. Now... I'm sorry.

Sensory substitutes and having fidget toys are also another component. The nutritional aspects, exercise, there's lots and lots of different things and it's never a one-size-fits-all treatment because people pull for different reasons. Trich is the messenger and is trying to tell the individual something's not quite right in your, in your body and I'm trying to get your attention.

So it's not the enemy, it's the messenger. We just have to figure out that code and give your body what it needs in another way. I'm going to say this, I interview a lot of people. You're amazing. You know the first time I met you when we were key note speakers at a convention, I knew you had a passion. I didn't know your background of how much depth you've gone into this area. I'm thrilled because you've taken it apart so that, number one they can understand it, and you've not classified everybody under the compulsive disorder. And I know that comes from your training but it comes from your practical application of really dealing with people every day.

And because you're in a different location than everybody that's watching this across the world-globe. Where and how can they find a doctor with the compassion and the understanding that you have to help them if, you know, because we're also putting them in contact with people like ourselves that can take care of their hair loss with the prosthetic and the hair replacement process to help break that compulsive disorder. In, in reality of that blocking process in the, in the hair replacement, how can they find somebody to also like we in Cleveland coach with a psychologist, like you, to help people throughout their growth out of that particular case scenario? The good news is there are more resources now than what there were even five years ago. So I was just in San Francisco a few weeks ago providing a training to psychologists in that area to teach them. It's an intensive weekend, to teach them how to be more competent in treating body focus repetitive behaviors like Trichotillomania. The best resource to go to is the TLC Foundation for BFRB's, as we were talking about before, bfrb.org.

They have a link on their website for 'find a therapist' or 'find a psychiatrist' or whatever type of provider you're looking for, 'support group'. You can click on that. Type in your zip code or your city or state and you'll get all the local resources in your area. Now there used to just about twenty-five therapists across the United States that specialize, now there's so many more. So, so take a look at that website.

I think that that's great the Heart and Soul Academy which was recently founded by the same woman who founded TLC foundation, for body focused repetitive behaviors. Her name is Christina Pearson. She started Heart and Soul Academy. She provides online mindfulness classes. She's that organization that's also having the retreat coming up in Colorado this fall. That's another great resource for people. So those are a few options. I also developed my program called Courage Critters, couragecritters.com.

I was hoping to get to that. Yeah. And that has a section on that as well for BFRB's. To help people who maybe do not have a therapist in their area. Great. And we're going to actually put that little offer that you put together for that Critter, it's an amazing little situation that people can utilize. Adults as well as children, I'm just so thrilled about that.

This is a message that has to get out there so they truly believe they're not alone. Yes. Lose the embarrassment so they can come out of hiding and they can begin to live life look in themselves and truly being beautiful inside and out, with hair.

Well I never like the clock because, especially when we get into these kind of situations. It's so good I could stay here for a week and I know that you have the amount of the information that would keep us in volumes of insights and understanding. But if you've been listening audience right now, and heard something of interest, you can find all the information, all the websites, and all the contact information right below this program. And I really want to challenge you, if you have this compulsive disorder, if you have the compulsive disorder of Trichotillomania, if you have a daughter, if you have a son, if you have a brother, sister or any loved one, help them by finding out more about their situation through the organizations that we've talked about. And to continue to tune in to the Hair Loss Solutions TV program because we are going to continue to bring the ability for you to find solutions to your hair loss issues and to give you ability, as I said, to look beautiful inside enough.

Dr., thank you so much. I just appreciate what you added to our program and the information to our audience and I look forward to being with you again on another interview in the near future or maybe even speaking engagements we would working again together. Absolutely. Thank you. Thank you for what you do as well. Thank you. We want to thank our show sponsor Wigs for Kids, whose mission is to help children look themselves and live their lives.

If you'd like more information on this beautiful charity that helps thousands of children log on to wigsforkids.org. And remember the answers to your hair loss concerns won't end here. The conversation continues with more experts and solutions to your questions on hairlosssolutions.tv. And I'd love to hear from you. Send me your message with any of your questions or concerns in the 'Ask Jeffrey' section of our website. You can also subscribe to us on Youtube at Hair Loss Solutions TV. Thank you for watching this episode of Hair Loss Solutions TV. And remember, beauty begins within.

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