Up to 80% of people with schizophrenia aren’t aware they’re experiencing early schizophrenia symptoms. Most people with schizophrenia go through a prodromal stage, where there’s subtle changes in mood, thinking, and behavior. It’s an evolution of the symptoms to come.

Early indicators vary based on the age they start. An adult who develops schizophrenia will experience different signs than a child who develops the condition.

Host Rachel Star Withers and cohost Gabe Howard explore the early signs of schizophrenia in children, teens, and adults.

Joining to discuss the future of identifying biomarkers for schizophrenia is Carlos Larrauri, a psychiatric mental health nurse practitioner who also lives with schizophrenia. Mr. Larrauri co-chairs the steering committee for the Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ), which is working to identify early indicators of schizophrenia.

To learn more about the research AMP SCZ is undertaking, please visit www.ampscz.org.

Carlos A. Larrauri, MSN

Carlos A. Larrauri, MSN,is co-chair of the Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ) and has formerly served on the National Alliance on Mental Illness (NAMI) and NAMI Miami-Dade County Board of Directors. Diagnosed with schizophrenia at 23 years old, access to quality mental health care, community-based treatment, and early intervention afforded him the best opportunity for recovery.

Mr. Larrauri is pursuing a law degree at the University of Michigan Law School and a concurrent master in public administration at the Harvard Kennedy School, where he was Zuckerman Fellow at Harvard’s Center for Public Leadership. He’s board certified as a family nurse practitioner and psychiatric mental health nurse practitioner and formerly lectured at the University of Miami and Miami Dade College.

Mr. Larrauri aspires to interface advocacy and research to reduce health inequities for people living with mental illness. To learn more about Carlos and his work, visit his website or his LinkedIn.

The Accelerating Medicines Partnership® (AMP®) program—Schizophrenia (SCZ) is a public-private partnership between the National Institute of Mental Health (NIMH), the U.S. Food and Drug Administration (FDA), the European Medicines Agency, and multiple public and private organizations.

Launched in 2020 and managed by the Foundation for the National Institutes of Health, the AMP SCZ program addresses the critical need for more effective treatments for people with schizophrenia and related mental health conditions.

The overarching aim is to improve our understanding of disease pathways and identify new and better targets for treatment.

Rachel Star Withers

Our host, Rachel Star Withers, creates videos documenting her schizophrenia, ways to manage and let others like her know they are not alone and can still live an amazing life. She has written Lil Broken Star: Understanding Schizophrenia for Kids and a tool for schizophrenics, To See in the Dark: Hallucination and Delusion Journal. Fun Fact: She has wrestled alligators.

To learn more about Rachel, please visit her website, RachelStarLive.comm.

Gabe Howard

Our cohost, Gabe Howard, is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, “Mental Illness is an Asshole and other Observations,” available from Amazon; signed copies are also available directly from the author.

Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without. To learn more about Gabe, please visit his website, gabehoward.com.

Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.

Announcer: You’re listening to Inside Schizophrenia. Hosted by Rachel Star Withers, an advocate who lives openly with Schizophrenia. We’re talking to experts about all aspects of life with this condition. Welcome to the show!

Rachel Star Withers: Welcome to Inside Schizophrenia, a Healthline Media podcast. I’m your host, Rachel Star Withers, here with my great co-host, Gabe Howard. Schizophrenia is a serious mental health condition that affects a person’s behaviors, thoughts and feelings. The early indicators or signs of schizophrenia will differ from person to person. As much as 80% of people with schizophrenia aren’t aware they’re experiencing early symptoms. Early indicators also vary based on the age of onset. An adult who develops schizophrenia will experience different signs than a child who develops schizophrenia. Today, we’re going to explore some of those early signs to look for in each of the age groups.

Gabe Howard: And to help us out today, we’re joined by Carlos Larrauri. Carlos is a psychiatric mental health nurse practitioner who also lives with schizophrenia. Mr. Larrauri co-chairs the steering committee for the Accelerating Medicines Partnership Program Schizophrenia AMP, which is working to identify early indicators of schizophrenia.

Rachel Star Withers: While schizophrenia can occur at any age, the average age of onset is for males, early teens to early 20s and then for females late 20s to early 30s. It’s viewed as starting, at that first episode of psychosis, where the person cannot distinguish what’s real and what isn’t. However, that’s not really the start of schizophrenia. Many times, we missed all of those red flags. Around 75% of individuals with schizophrenia actually experience what’s called a prodromal stage. This is where there’s subtle changes in mood thinking and behavior. And this could be weeks, months or even years before that first psychotic episode.

Rachel Star Withers: In this beginning stage, that prodromal stage, it’s an evolution of the symptoms to come. Some of the ways that hallucinations start are actually noises, sounds, whistles, hissing kind of things. You can’t quite figure out where they’re coming from. It’s not the kind of stuff like if I’m hearing a knocking noise at night, I’m probably not going to go to my doctor for that. If I’m hearing kind of whispering, it’s going to be like, Well, that’s weird. It might slowly grow over time, but there is no just sudden whoa, that’s happening. That’s what’s hard for family members a lot of times to grasp is they think that it came out of nowhere and it didn’t. There was a slow progression that the person’s been going through before they fully get into a delusional state or a state of hallucinating. One thing with delusions, some of the beginning stages of going into a delusional state is feeling like your thoughts are blocked, feeling like you just can’t think for some reason.

Gabe Howard: Rachel, it really looks like one of the first symptoms of schizophrenia is disorganized thinking. But I can see where the average person who is having disorganized thinking would just think that they were overwhelmed or stressed or lacking focus. I think that many people experience disorganized thinking and don’t think to themselves, oh my God, I have schizophrenia. So, I imagine that that can be really, really hard to tease out in the moment. What’s the difference between lacking focus, being overwhelmed, being overstressed and disorganized thinking that you should be worried about for schizophrenia?

Rachel Star Withers: It’s hard to tell. Another sign is you’re forgetting appointments. I mean, there’s a million reasons you can start to be forgetful in life. It could be you have a family member that you’re having to deal with. It could be job stress and it could be like a lot of other reasons. So, it’s hard to just have these very subtle symptoms and be like, okay, well, clearly this person has schizophrenia. This isn’t a diagnostic stage we’re talking about, but these are subtle signs to start looking for.

Gabe Howard: Many people are like, how could you not know? How could you not know? And family members hear this all the time. Well, why didn’t you help your loved one? How did you not know they were sick? And people believe in their minds, well, I would have noticed. It’s a very common criticism that I hear from both people living with schizophrenia and their family and friends where the external society’s like, well, I would have noticed if something was wrong with my loved one. But you can see it’s much more subtle than that, because disorganized thinking and even other mental health and schizophrenia-related symptoms can mirror just stereotypical human behavior. So, when society gives that pushback, well, I would have noticed if something wrong was wrong with my loved one. Yeah, no, they wouldn’t have. They’d be in the exact same shoes as you are because it’s just so complicated.

Rachel Star Withers: And that, of course, applies to why didn’t you, the person with schizophrenia, get help? Why didn’t you reach out sooner? I remember I was in college and I kept having trouble remembering things and I was getting confused and that was very abnormal for me. And I went to the school counselor and I talked to them and they’re just like, oh, well, this is a change in your life. There’s, you know, and they just kind of blew it off. Oh, don’t worry, sweetie. They didn’t think it was a big deal. And I can understand where they’re coming from because that could be a logical answer. You know? Yes. You’re away from your family. You’re having to learn all these new classes. It’s hard to keep up with that. Just things with schizophrenia aren’t black and white. It’s not always as clear as, oh no, I’m going crazy, I need to get help. It’s not a light switch and your whole life falls apart. It can feel that way. But there are subtle signs that might be happening even if you don’t notice them. With children, this can be really difficult. Gabe, kids are weird. How in the world?

Gabe Howard: Kids are weird.

Rachel Star Withers: Yeah.

Gabe Howard: No, no, no doubt about it.

Rachel Star Withers: How am I supposed to tell the difference between a very creative, imaginative kid and one who might be hallucinating? It’s hard to tell. Childhood schizophrenia is not very common. There are some signs of it, though. Children are going to describe what’s happening to them different than adults. So, if you have a child that keeps talking about monsters, or especially if you are if your family is religious and they might start talking about maybe someone from your religion or a common character that they know from their books, because that might be how they associate what they’re seeing, what they’re hearing, the voices. Any time you start to worry about your child, it’s a good thing to kind of monitor it and get help. I personally don’t believe that you can diagnose schizophrenia really quickly as a child, and I think it is good that they hold off a lot of times because some of the things like autism, hearing disorders, speech impediments can look like some of those beginning stages of schizophrenia.

Gabe Howard: So, what is somebody supposed to do? Because as we’ve established, if you wait too long, you’re a bad parent. But if you jump the gun, you’re also a bad parent.

Rachel Star Withers: You just have to watch your child. And as you see things that worry you, do try and get help. A lot of the times, it’s kind of narrowing it down. Okay, what is the issue? Because it could be a speech impediment, a hearing impediment. It honestly it could be a situation with your eyes where the child needs glasses and that’s why they’re not seeing things correctly. There’s a host of issues with children. As they become teens, it might be a lot clearer that it’s becoming schizophrenia.

Gabe Howard: What are those symptoms look like in the teenage years?

Rachel Star Withers: The biggest kind of factor that you’re going to notice is a significant drop in their grades. And that is, that’s still such a hard, I mean, that could be. There’s still a lot of things. So, just because your child suddenly starts doing bad in school doesn’t necessarily mean schizophrenia, but it is a big sign when it comes to, okay, something mentally has started to change. Your teen might talk about that they’re having trouble thinking clearly or concentrating. Extreme sensitivity to lights and sounds. Your teen is talking about, yeah, hearing or seeing things that don’t bother other people, that that would be the clue. I had a coworker reach out to me once and he was like, Rachel, I just want to tell you this and I just want your opinion on it. My teen daughter keeps complaining about the people upstairs. No one lives above us. And he said she hears them whispering, she hears them walking. Is this something I should worry about? Is this or is this just like a weird teenage girl thing? And I was like, that That’s past weird teenage girl thing. I would double check to make sure there aren’t some kind of creepy people who come up in the attic, too. Because we have heard those horror stories. But yes, whenever you have something that goes beyond the normal teenager situation, I do think it’s time to get help.

Gabe Howard: And I also want to touch on something that I don’t think gets discussed enough, which is you don’t have to have the answer in order to seek a medical opinion. Could you imagine if it worked this way over on the physical health side? Well, my son is complaining that his leg hurts, but I’m going to wait to see if it’s broken before I go to the doctor. Or my husband is complaining of chest pains, but I’m going to wait to see if he has a heart attack before I go to the doctor. When you say it in terms of physical health, you’re like, well, of course you don’t have to diagnose it. You’re not a doctor. But over on the mental health side, it’s, hey, I have this concern, but I’m not sure that it’s schizophrenia, so I’m not going to make the appointment until I am or I’m not sure that it’s psychosis. So, I’m going to wait to make the appointment until I am. And you don’t have to be that way. Suspecting that something wrong is enough because there’s only two outcomes here. One, there is something wrong and medical intervention can then be applied. Or two, there’s nothing wrong. And you are reassured that, hey, it is in in Rachel’s words, just a teenage girl thing. And now you know, you do not have to play doctor. The suspicion of something is enough for you to make that initial appointment. And then whatever happens after that is, is going to happen.

Rachel Star Withers: Probably the hardest emails for me to deal with from listeners of the show is the situation of a college teen. They’re 18 years old. They’re 19 years old, they’re early 20s and they don’t live at home anymore. And the parent has absolutely no control. They can’t force them to get help. So, what do you do in those situations? Sometimes there’s not much you can do other than continually reach out. Some of the big signs that the person’s mental health is deteriorating is if they suddenly stop attending classes in college, just they drop out. Do they just stop showing up? That is a big red flag with schizophrenia. Doing less and less work. If you look back over my college career, when I started college, I was taking the maximum number of classes, no problem. It was great. And then you look at my transcript from my final year. I was taking the minimum number of classes and those were very, very hard for me to even just make it to those. And it extended me going to college a whole nother year and a half because I was doing the minimum. And that’s something that my parents probably wouldn’t have thought to look at. But if you did have my transcripts, you could kind of see the deterioration going on from my first year of college to my last.

Gabe Howard: Do you have any specific examples that you can share with our listeners?

Rachel Star Withers: Yes. So, some different ones that some people with schizophrenia pointed out and their loved ones pointed out. One had a high schooler who was big into sports, they were on the varsity team. They were going to play in college, hopefully go pro, and the student stopped playing. They just completely became disinterested in anything to do with sports and for their family, that was a big red flag of, wait a second, this was your whole life. And then suddenly we can’t even get you to go to practice? Another one with adolescents, they kept hearing a buzzing noise and the parents took them to, you know, a doctor for their ears. And after they ruled out that there was no hearing issue, it came up that they were starting to hallucinate. And the hallucinations grew from what was, at first a buzzing noise. A lot of people, myself included, report shadow people. Um, it’s something that I feel like anyone can kind of grasp. Like a shadowy figure, that is very common with schizophrenia. And I don’t know if it’s like a beginning hallucination exactly or what it is, but yeah, if you were asking me to describe the shadow person, I’d be like, Well, it’s a person and they’re shadowy.

Gabe Howard: Right, right. It’s right in the name. [Laughter]

Rachel Star Withers: I mean, I’d be like, I can’t draw you specifics. They’re everywhere at night. They’re very annoying. A lot of teens will talk about the shadow people, and that’s a huge red flag. A few years ago, there was the Slenderman case where the two teens attacked another teen girl. And I remember hearing about it in the news. I have no idea what Slenderman is without having to Google it, though, just the name of it. I thought that that’s a schizophrenia. There’s schizophrenia related to this. My initial thought was that’s probably a hallucination of schizophrenia. And when I looked up Slenderman, yes, it’s this big kind of fuzzy, dark character. What came out later in the case is, yes, one of the young girls did have schizophrenia. She was really seeing the Slenderman character. And that just hit me so hard because. It. It was such a sad case. The young lady, if you really are seeing these characters and they can be very, very scary. And what do you do? You don’t know how to make them go away. All of us are so scared about like teens going to school nowadays with the school shootings. There’s so many other issues. Yes. Worrying about their mental health is just added. An added type thing. But it is very, very important. And I don’t think I’ve ever met a parent who’s reached out to me worried about their kids’ mental health, who absolutely didn’t love and just want to do so much to help. I worry a lot for the ones who don’t have that support system. And I worry about the ones who their parents just aren’t able, for whatever reason, to be there as much. They’re working full-time to provide food. I wish there were more situations where a school would take mental health more seriously for their teens and able to recognize these subtle signs.

Gabe Howard: There is a mental health need that has gone unchecked. That’s always very, very sad when you think, oh wow, an ounce of prevention would have been a pound of cure.

Rachel Star Withers: The sooner you’re able to get help with schizophrenia, the better the outcomes are. When we’re talking about adults. Adults, Gabe, we’re not as weird as kids, so I feel like it’s more noticeable when an adult starts to go downhill, mostly because we have work. Some signs are the person suddenly starts having difficulty holding a job or they might stop attending work. Their work quality might go down. Another one is that extreme sensitivity to light and noise. When they’re giving speeches at work or leading conferences or leading even just like a meeting, jumbled speech. I know that’s one that always gets me. The minute my words start to jumble. When I used to teach acting classes, I knew I was getting bad and I would just start getting caught in my tongue and I would literally have to step back and be like, I can’t. I can’t talk anymore. And had I looked back, um, in my early 20s, yes, I at certain times started having a lot of trouble speaking, which was weird because I grew up in theater. So, these are like kind of red flags that that schizophrenia might be starting. Another one is that they’re avoiding your family. If it’s someone who lives far away and, you know, my brother always calls and checks in with mom every Sunday night and then they stop doing that and you can’t get them to go to family gatherings. This person is starting to isolate.

Gabe Howard: And it’s important to remember that it might not be schizophrenia. It could be any mental health issue and/or mental illness. But because this is a podcast about schizophrenia, these are indicators that schizophrenia could be involved.

Rachel Star Withers: A very powerful animated short, I suggest for everyone to watch is called Skhizein, and it’s a French animated short by Jérémy Clapin. And I’m going to have the link to it in our show notes. But it’s very powerful because it shows a man who starts to have a delusion and how it affects his work. And it’s only 13 minutes long and you watch this man continually try to adapt to his work to this delusion, and you just slowly see it all fall apart. And it’s one of the most powerful, relatable things for me. So, I definitely suggest it looking it up for the friends and family, because it will it will help you understand your loved one more.

Gabe Howard: I wish there was a test for all of this. Rachel, is there a test for schizophrenia?

Rachel Star Withers: No, there currently is not. As the cause of schizophrenia is still up for debate amongst many circles. However, there are groups that are working to find new ways to identify schizophrenia before you go into that first psychotic episode. And our guest, Carlos Larrauri, who is a psychiatric mental health nurse practitioner who also lives with schizophrenia, works with the Accelerating Medicines Partnership Program, Schizophrenia. And their overarching aim is to improve our understanding of the disease pathways and identify new and better ways to target schizophrenia and ways to treat it.

Gabe Howard: All right. Let’s go ahead and roll that interview now.

Rachel Star Withers: Today I’m speaking with Carlos Larrauri, who is a mental health clinician and advocate. Thank you so much for joining us today, Carlos.

Carlos A. Larraui, APRN, MSN: Thank you, Rachel. It’s my pleasure.

Rachel Star Withers: Give our audience, give them your basic bio.

Carlos A. Larraui, APRN, MSN: Sure. Well, I’m a mental health clinician by training. I received a master’s in science in Nursing at the University of Miami, and I took board certifications as a family nurse practitioner and psychiatric mental health nurse practitioner. I’m a clinician. I see patients, I diagnose, assess, prescribe medications and so forth. But I’m also an advocate. I ran support groups and taught other peoples to run support groups and the community outreach and wrote op-eds. I served six years on the National Alliance on Mental Illness, National Board of Directors, and have had the opportunity to lead national initiatives and efforts to advance the well-being of people with mental health conditions.

Rachel Star Withers: Awesome and thank you so much for all the advocacy work that you’re doing and the different boards you’ve served on, because nothing makes me happier than someone with a disorder being part of those groups. So many times, it’s just, you know, mental health professionals who don’t have the disorder. So, thank you to being someone out there who can, like, speak for us.

Carlos A. Larraui, APRN, MSN: No, that’s right. I mean, it’s been said before and nothing about us without us. So, it’s important that we join these boards and we join advocacy organizations. And we at the end of the day, we got the most skin in the game, so to say.

Rachel Star Withers: When did your schizophrenia first start to happen?

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Gabe Howard: And we’re back discussing the early signs of schizophrenia.

Carlos A. Larraui, APRN, MSN: My schizophrenia first started around late adolescence and early adulthood. It began with kind of more cognitive and mood symptoms. Trouble focusing and concentrating on routine assignments and completing papers or homework that normally wouldn’t be an issue. Trouble staying asleep. Feeling moodier. More introspective. Some self-medicating with marijuana and things like that. But it wasn’t really until my senior year of college when they kind of onset of what we appreciate as the more well-known such as schizophrenia occurred. That is a psychosis. The hearing voices, the delusions. I started to hear voices talking to me, telling me I was an angel or I was a prophet. I started to have delusions that the television would talk to me. Or I’d be watching a basketball game or listening to a song. And it felt as if the artist or the or the basketball players were talking to me. One of the things with schizophrenia is people think of a psychotic break, but that’s kind of really a misnomer. It’s more of like an insidious sort of gradual, um. Slide into a fog. And initially you kind of have a sense that something is off. I went to go see the school psychologist and said, hey, I’m not sleeping.

Carlos A. Larraui, APRN, MSN: I’m having trouble completing my schoolwork. And I know something just feels off. But we really couldn’t identify or intervene at the time. We failed to really see what was happening. No one really saw them for what they fully were and took the kind of first episode, the florid manifestation of psychosis for people really to say, oh, hey, what’s going on here? This isn’t just, you know, stress. This isn’t just, substance abuse. Isn’t just kind of normal teenage or young adult transitional problems. There’s really something serious happening here.

Rachel Star Withers: What are the early indicators of schizophrenia?

Carlos A. Larraui, APRN, MSN: Well, early indicators of schizophrenia can be challenging to identify and can include things that are not full-blown manifestations of psychosis quite yet. There’s a period before the first episode of psychosis known as the prodrome or in other parlance, the clinical high-risk period. It can be some strange thoughts, maybe thoughts that people are following you or could read your mind, or that you’re living in a sort of alternate or feel like you’re in an alternate reality or a dream. These kind of thoughts indicate maybe there’s some breaking from reality occurring. Some cognitive symptoms, trouble focusing or concentrating or trouble interpreting other people’s social cues. Mood symptoms. Anxiety, depression, general psychiatric symptoms. What makes schizophrenia particularly challenging is that during the early phase of it, its presentation is somewhat difficult to pin down and it’s really hard to identify someone. And it speaks to why we need things like objective biomarkers that could ultimately do that.

Rachel Star Withers: Something that you’ve been working with is the Accelerating Medicines Partnership Program with schizophrenia. What is that?

Carlos A. Larraui, APRN, MSN: The Accelerating Medicines Partnership Program with Schizophrenia is a large public-private partnership that aims to catalyze medical innovation in schizophrenia. It’s a 100 plus million-dollar project that brings together various stakeholders like the Foundation for International Student Health, the National Institute of Health and the National Institute of Mental Health, Food Drug Administration, as well as industry partners and advocacy organizations or nonprofits such as OneMind and National Alliance on Mental Illness. AMP Schizophrenia is aiming to facilitate that innovation, particularly by developing tools such as biomarkers to help with the drug development, to make the drug development process faster and more effective.

Rachel Star Withers: What type of tools would you mean? For making medications?

Carlos A. Larraui, APRN, MSN: Sure, when I say tools, really the Holy Grail and kind of the scientific frontiers is biomarkers, is

Rachel Star Withers: Okay.

Carlos A. Larraui, APRN, MSN: Objective measurements of the illness. Another example of a biomarker, for example, is A1C, which is a test that you get when you want to get a sense of how your body is in processing glucose the past several months and if you’re at risk for diabetes. It’s an objective measure of a biological process in your body. In the case of schizophrenia, we still don’t have these biomarkers. When you go to a doctor, you know your doctor will ask you, how are you feeling? How are you sleeping? They might ask you a more structured interview. Questions like, do you have thoughts that people are following you? Do you have thoughts of TV’s referring to you? To kind of assess psychosis. That’s how most diagnoses occur. The problem with the subjective measures is it makes getting clinical care more challenging. But it also makes drug development more challenging because we also don’t have ways of effectively measuring. If the medication is being used in the right population or if it’s working or if it’s changing a biological process.

Carlos A. Larraui, APRN, MSN: And that is hindering the field from moving forward. So, the hope is that with biomarkers the ultimately develop algorithms and inform who is going to be most helped by a certain medication or who what population will be most responsive to a certain intervention.

Rachel Star Withers: As a clinician, what are the implications of this research?

Carlos A. Larraui, APRN, MSN: it may allow us to have much better treatment options for our patients. Right now, the status quo is that we’re essentially using the same medications we have for the last 70 years. In some ways, you know, the first antipsychotic that came to market was around 1954. And it worked by essentially blocking the neurotransmitter in the brain at a specific site, dopamine, the D2 receptor. And in the 70 years since then, all the antipsychotics have come to market are essentially the same mechanism. They’re dopamine antagonists, they block dopamine. With the development of AMP Schizophrenia and its successful efforts, developing biomarkers that can stratify people into different groups and tell us who’s at risk for developing the illness and if they’ll respond to a certain medication and how that medication is working through some sort of biological or objective measures. By doing that, we can bring new medications to market and allow people to have more choices. If we can if we have tools that can say this person because of this collection of measurements or assessments, is that is that this greater amount of risk and we can identify before they get to that kind of heart attack stage or, you know, a stage four in the disease process. You know, we can change the course and the trajectory of the illness so that people could have better outcomes.

Rachel Star Withers: The biomarkers would they mark specifically schizophrenia or would it be like just a mental illness in general?

Carlos A. Larraui, APRN, MSN: What we’re seeing is that people that are at risk for schizophrenia are this group that we call the clinical high-risk population. And most people that are at risk for schizophrenia don’t necessarily develop it. Most people, a significant sum of people remit, that is, they go back to kind of a baseline of normal psychiatric health and functioning, even though they’ve had this period of kind of like subthreshold psychotic symptoms or some social cognitive or mood symptoms, some maybe some dysfunction, some people go on and they have more of the cognitive features of the aspect of the cognitive aspects of the illness, trouble concentrating, focusing, as I mentioned. But some people do go on to develop full-blown psychosis and develop schizophrenia. And even within that, you know, the course of the illness can be vastly different for some people with schizophrenia who. Just depending on a variety of factors. So, I think with the AMP Schizophrenia effort, we’re really trying to pinpoint here biomarkers for this facet, for developing, for finding out who’s at risk and kind of what trajectory they’re likely to have so we can understand who can be most helped by medicines.

Rachel Star Withers: As I’m listening to you speak, on one hand I’m like, oh wow, that would be really cool if you could go to the doctor and just have a physical test done of some sort to find out, you know, what medicines will help best for my schizophrenia. On the other hand, that also sounds a little scary. That if they can biologically tell what’s going to stop, the government from labeling certain people as dangerous as, unfortunately, people with schizophrenia, we’ve been through that before.

Carlos A. Larraui, APRN, MSN: That’s a really good question and a really good observation. The history of psychiatry is replete with examples of people like you mentioned, being labeled dangerous. People weaponizing psychiatric diagnosis and labels for political reasons for power or to subjugate people. This is why we need a conversation with the people that have the most skin in the game, with people with lived experience, with families and advocacy groups. To ensure that data and privacy and confidentiality are foremost concerns and top of mind considerations. Psychiatry is firmly rooted in the kind of biomedical paradigm. It’s also more it goes beyond just that because you know what influences people’s mental health isn’t just their genetic predisposition or their biology, but also their engagement with their society and their social surroundings. Do they have affordable housing? How do they interact with the health system? Do they have access to education and nutrition and all these things that impact people’s mental health, including serious mental health conditions like schizophrenia? So, I don’t want to be like reductionist and just say, look, this is all biological, we’ve just got to find this key that unlocks the puzzle. I think we can do a better job of developing better medications. But the medication piece, even though it’s often necessary, is also insufficient. We know that what goes into recovery is also, you know, living a healthy, productive life. It is also peer support. It’s also therapy. It’s also cognitive remediation interventions. It’s also volunteering. It’s also whatever it may be. Looking at it through the biomedical paradigm is important, but it’s just one part of the puzzle. And to get back to what you were saying, I also want to acknowledge that there are some risks with a world where some of our data, especially aspects of our data that might be very personalized or could be stigmatized are so readily accessible to others. I’d like to think that in our country we may not go as far as subjugating people based on the psychiatric diagnosis, but then again, we have in the past.

Carlos A. Larraui, APRN, MSN: So, you know, is there a risk that biological information or data that we offer our provider can be used against us? Absolutely. I think that’s a risk. And I think that that’s present with other conditions, especially ones that are stigmatized like HIV or so forth. But I think that’s why we need people with lived experience and patients and families at the table informing how we will use that data, how we’ll be safeguarded, how we will regulate it and things of that nature. But I think the net potential good outweighs the risk. There is the potential benefit of effectively saving lives, effectively changing the trajectory of people’s experience with schizophrenia. I think we just have to proceed carefully. But I think we still have to proceed forward.

Rachel Star Withers: Something very important that you said there was that yes, people with schizophrenia, patients need to be at the table.

Carlos A. Larraui, APRN, MSN: Yep.

Rachel Star Withers: Just like how you’re serving on all these different boards, how you are part of it. That’s one of the ways that everyone out there who fears about being labeled like that’s one of the ways around it, is as long as we’re part of the discussion as it’s happening.

Carlos A. Larraui, APRN, MSN:, and hopefully this is a call to action to others. You know, if there’s one thing

Rachel Star Withers: Yeah.

Carlos A. Larraui, APRN, MSN: I’ve learned with living with this illness is that you have to advocate for yourself. And if you have the capacity to advocate for others, do so as well. I think living with a condition like schizophrenia is certainly more challenging than without it. That being said I have still managed to live a very rich and fulfilling life. And

there’s an increasing appetite by industry, by government, by other stakeholders in the ecosystem of psychiatric care and drug development to bring together the community and integrate them into research and policy making, because I think they recognize that it builds trust, it builds legitimacy. It hopefully leads to outcomes with the end user in mind, us, the family and the patients that live with these illnesses.

Rachel Star Withers: I’m so thankful to have you on the show because you are so impressive to me, Carlos, that you do all of this work. You are a mental health clinician and you manage your schizophrenia. And thank you so much though, for being like a great role model. Because that also helps change like people’s fears is that is when they can see someone. No one’s looking at you like, oh gosh, I’m scared of Carlos because he’s a schizophrenic. They’re like, wow, Carlos is really impressive. He has done all this amazing stuff. The schizophrenia is like just a side, a side fact.

Carlos A. Larraui, APRN, MSN: It just adds to the character development.

Rachel Star Withers: Yeah. Well, yeah. Yeah. Yeah.

Carlos A. Larraui, APRN, MSN: Yeah. But I do think representation matters. And I do think it’s important to have leadership with lived experience. And what cures stigma is storytelling for people with lived experiences. Getting to know someone that has those experiences as a friend, as a colleague, as you know, as a human. And that’s what changes people’s perceptions.

Rachel Star Withers: Absolutely. How can our listeners today learn more about the Accelerating Medicines Partnership?

Carlos A. Larraui, APRN, MSN: By checking out our website, ampscz.org. That’s A M P S C Z dot org. And if you want to learn more broadly about the work of Accelerating Medicines partnerships they can visit FNIH.org. That’s F N I H dot org.

Rachel Star Withers: And how can our listeners learn more about you, sir?

Carlos A. Larraui, APRN, MSN: So, our listeners can learn more about me by visiting my website, CarlosLarrauri.com. That’s Carlos L A R R A U R I dot com. And as a selfish plug, if they’re interested in music about lived experience and recovery, they can visit FogDogMusic.com. F O G D O G music dot com.

Rachel Star Withers: Carlos, thank you so much for joining us today. Absolutely amazing, your professional work, but also your life’s work. So, thank you so much.

Carlos A. Larraui, APRN, MSN: Thank you, Rachel. It’s a lot of fun.

Gabe Howard: Long time listeners of the show know that I’m going to say great interview, as always, Rachel. And I wanted to ask you, what are your thoughts on one day there being a medical test that could identify people who would develop schizophrenia?

Rachel Star Withers: The sooner you recognize the signs and you’re able to treat schizophrenia, the better. So, if you have a test that flat out says, hey, this person is probably going to develop schizophrenia in three, four years, that’s amazing. It’s almost like you can start pre-treatment. It’s also scary to me, Gabe. For one, I would think that, okay, if many people schizophrenia starts in their teens, then this test would have to be when they were children. Could it even evolve to scanning for schizophrenia when the child is in the womb? Could it be that suddenly now parents have to make a decision to keep a child or not? There’s it’s kind of a very dark, slippery slope. And you also have a fear of being labeled. Okay, well, we know this person is going to have schizophrenia soon. Maybe they don’t need to be put in the college prep program. Maybe we need to put them in a special program. What I liked when Carlos spoke is that he is part of the committee. He is part of working on these different emerging technologies. And that’s the key. You have to have people involved who have the disorder of whatever it is you’re searching for because that’s going to keep the playing field level. Stop those slippery slopes from happening is when you have someone who, okay, this applies to me. Let me give my opinion on something that applies to me and people exactly like me.

Gabe Howard: Oftentimes when we talk about initiatives in anything, whether it be laws, whether it be medicine, whether it be treatments, etc., we always talk about the positives and I think it’s good to be positive. This is what drives treatments and options and hope and help forward. And that is fantastic. But in the mental health community, especially when dealing with schizophrenia, we aren’t so quick to consider the caveats. We aren’t so quick to determine the protective factors that are needed. Rachel, I’m not surprised that as a person living with schizophrenia, you would immediately notice all of the ways that this can be harmful. And I hope that the larger mental health community heeds your concern because it is extraordinarily valid.

Rachel Star Withers: If you or a loved one are exhibiting symptoms of schizophrenia, it’s important to reach out to a mental health professional as soon as possible. Write down the changes that you’ve seen in yourself or your loved one and the time frame. Look back, whether it’s school grades, attendance records, even work evaluations. Schizophrenia affects people from all stages of life, and the early signs of the disorder can vary greatly from person to person. While schizophrenia is a serious mental disorder, it is also a treatable one. And with the right medication, therapy and support, you can learn to manage your symptoms and lead an amazing life. Thank you so much for listening to this episode of Inside Schizophrenia. Please like share, subscribe and rate our podcast and we’ll see you next time here on Inside Schizophrenia, a Healthline Media podcast.

Announcer: You’ve been listening to Inside Schizophrenia, a podcast from Psych Central and Healthline Media. Previous episodes can be found at psychcentral.com/is or on your favorite podcast player. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. Thank you and we’ll see you next time.