Diagnosed at 16: Sree’s Journey from Tourette’s Diagnosis to Advocacy

What happens when you receive a life-changing diagnosis at 16—and decide to turn it into your superpower? In this episode, I’m joined by the incredibly driven and insightful Sree Lakkamraju. She’s a high school senior, NJCTS Youth Council member, TAA Youth Ambassador, and soon-to-be NYU student. But beyond the titles, Sree is someone who’s turned self-awareness and advocacy into action, and her journey is nothing short of inspiring.

We dive into her late diagnosis of Tourette Syndrome, how she navigated disclosures at school and with friends, and the powerful moment when she realized this wasn’t something to hide—it was something to own. From her experiences fencing, speaking publicly, and interning at Mass General Hospital, Sree has found a voice that’s helping educate, empower, and encourage others.

Episode Highlights:

[3:45] Biking, blinking, and awkward questions: how she explained her tics pre-diagnosis.
[6:33] The moment of clarity: getting the official diagnosis and what it meant to her.
[8:24] Disclosure struggles and the classroom experience that left a lasting mark.
[10:03] Discovering NJCTS and TAA—and realizing advocacy could be a superpower.
[12:19] How Tourette’s helped shape her confidence and public speaking skills.
[14:15] The speech that changed everything and what it means to find your message.
[16:52] Life outside of advocacy: fencing, leadership roles, and staying active.
[19:55] Why fencing became complicated—and how she plans to get back to it in college.
[21:14] Cold emails and big dreams: interning at Mass General Hospital.
[24:54] Insights from OCD/Tourette research and learning the ropes of a real lab.
[25:49] Looking ahead to NYU and life in NYC as a new chapter begins.
[28:26] Disclosure done right: different reactions from two very different school settings.
[31:33] Humor, boundaries, and knowing when to step into advocate mode.
[34:19] What it was like meeting 60+ other youth with TS at a TAA conference.
[37:19] Sree’s advice for those newly diagnosed—and for those supporting someone with TS.
[40:10] A final word on empathy, advocacy, and the value of finding your fire.

Links & Resources:

Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.

Transcript

Sree Lakkamraju: 0:00

I got diagnosed around my 16th birthday. My tics started when I was a toddler. I'm pretty sure I asked my parents like when they saw their first signs of symptoms of me, and I think it was pretty much like rubbing my face with my hands repeatedly. I went swimming one day, and they thought it was because of the chlorine, and I had a reaction, and then one tick that have remained very consistent the past, I think, like 13 years, was blinking my eyes a lot, and whenever I went to see different doctors just for checkups, they all said it was allergies or it was excessive screen time, and that this was something that was very repetitive and like reoccurring. So I didn't really think much of it. I Music.

Michael Leopold: 0:47

Welcome to the uptick brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research, by sharing the stories and experiences relevant to the TS community. Welcome back to the uptick. I'm here today with Sri Lanka Raju, a high school senior who will be a first year at NYU this fall. He's interested in pre med, neuroscience and related topics. So, Sri, how's your day going so far?

Sree Lakkamraju: 1:27

My day has been very hectic, actually. Oh yeah,

Unknown: 1:30

what's, uh, what's made it hectic? I

Sree Lakkamraju: 1:33

just gave an old school speech today, actually, about, like, my experience with Tourette's and advocacy. It's like I was giving like, a life lesson to the senior class and the underclassmen. So I had to prepare for that. I had, like, beat a rehearsal and actually, like, packing up to go home for the weekend. Right after this, I have this contest I have to attend to like, oversee and watch, so it's very hectic day. I'm a little stressed out, but that's

Michael Leopold: 1:58

a lot, yeah, I imagine, but very relevant to our topic here about Tourette. So love seeing that. Now, one thing that caught my eye with your background, reading your profile and there, there's a lot to chat about. You've been really active in njcts, and your advocacy work, and some, some like Bio Med research you've done. But another thing was you were only recently diagnosed. You were diagnosed at age 16. Would love to hear about your journey and what that was like, starting with maybe when your tics began, up through when you got that diagnosis.

Sree Lakkamraju: 2:28

Yeah, so I got diagnosed around my 16th birthday. My tics started when I was a toddler. I'm pretty sure I asked my parents like when they saw their first signs of symptoms of me, and I think it was pretty much like rubbing my face with my hands repeatedly. I went swimming one day, and they thought it was because of the chlorine, and I had a reaction, and then one tick that remained very consistent. The past, I think, like 13 years, was blinking my eyes a lot. And whenever I went to see different doctors just for checkups, they all said it was allergies or it was excessive screen time, and that this was something that was very repetitive and like reoccurring, so we just kind of wrote it off, and my parents would just ban me from, like, watching TV on the weekdays. So I didn't really think much of it, but I had a feeling that it was a bit more than that, because other symptoms of tics were a bit more severe as I got into middle school, and I really started notice, and people, other people started notice too. And I could tell, because they were coming up to me, and they came out to my parents too. So it was definitely a lot more serious than I guess you could say.

Michael Leopold: 3:36

What did you tell them when kids would come up to you before you had the diagnosis, and they're like, why are you doing that with your eyes or with your face? Like, what would you say?

Sree Lakkamraju: 3:46

Because I think most the time I was pretty oblivious. So like, I think I remember this one time I was biking with my friends, and then this woman's neighbor, she stopped me in the middle of the sidewalk, and she, like, put her hands on her hips and like, why are you licking your eyes like that, and I didn't know what to say. I was, like, 12, and I want to go back to playing outside my friend. So I was like, I'm just tired. I just had a long day, and I need to go to sleep soon. That's that was my, like, pre automated response every single time. And if it was with people at my school, usually didn't say anything. But I remember, like, very busy, like this one person, when I was walking in the hall, I had a very bad necktick That day, and I, like, swung my head around, and my friends noticed. Some of them didn't say anything, or when they didn't notice, or they just be nice. But this one guy walked by me, and he was like, like, he just, like, did a double dig, kind of, it's like, there's definitely something off that usually kids won't they. Before I got my diagnosis, they wouldn't say too much for me unless, like, Oh, why are you blinking your eyes? Why are you blinking your eyes? That was like, my biggest tick. Got it, the eye

Michael Leopold: 4:50

blinking. Yeah, yeah. So then you eventually, you did get the diagnosis, uh, and how? Who eventually diagnosed you? How did that that finally come about? Yeah.

Sree Lakkamraju: 5:00

I went to a neurologist. I think the timeline was a bit fuzzy, because there were so many appointments that got stacked up eventually, because my mom and my dad, they kept insisting, you should see a neurologist. You should see a neurologist. I think they started realizing a bit more subtly that it was something else that wasn't what the doctors were saying. And I think I remember finally he was like, I couldn't avoid the appointment anymore. So I went and I forgot, I think they said it was a tic disorder at the time, but I only listed, I think, two tics, and I sort of mentioned vocal tic. But I think because there's a lot of stigma and, like Asian households about getting that kind of diagnosis, also, my parents didn't know what Tourette syndrome was. I didn't know what Tourette syndrome was. I didn't know what take disorder was. I thought they meant like, like a deer tick when they told me take disorders. So they just said, yeah, she has a tick disorder. It probably would last for a year, but since mine has been around for years and years and years, I don't know. I didn't say was Tourette Syndrome, because they only recently diagnosing it a year ago, even after I started doing all the advocacy, when I had a follow up checkup appointment, I was talking about my work with my neurologist, like, regularly, and she was like, What do you mean? You don't have Tourette Syndrome. We have a documented tic disorder. I was like, how there's no way. And then I was like, No, I have a list of all the tics I've had, I just was too scared to say it, I guess so that's probably of me. But I was very scared to bring up those tics, because it was, like, a vulnerable part that I did not want to share with other people, even my parents.

Michael Leopold: 6:33

It's tough. Yeah, I remember being a kid when I was going to the doctor's visits, and my mom, I think, pointed out that, like she's, like, you never tick in front of the doctor and, like, they're, they're gonna think you don't have Tourette's, you know, because you don't. And I think I was just being a kid. I was so used to holding it back and just not ticking in front of like an authority figure, or like an adult, or really, in front of anyone. I don't think I took I would sometimes, just without even realizing it, I'd hold my tics back in front of kids. So, you know, whoever I was around. So I think a lot of that's just like second nature for us. But hey, you got the diagnosis eventually. And what's Have you noticed any changes or anything in your life since then? Or is it just kind of, hey, now we have a name for it.

Sree Lakkamraju: 7:13

I remember, like when I got a name for it. I wish I could remember my exact reaction the moment, but just the overall feeling was a lot of clarity and relief. That's how I used it to describe to my dad, we talked about a lot. I was like, it feels so nice to put a name something that's been bothering me. It's like a puzzle piece that you kind of got to fit together. Because I knew there was something off that I couldn't describe. Like, just there's like, I mentioned takes that or, like, I know a lot of people are kind of sensitive about sometimes, like, sharing their takes with people, because it can be a very personal thing. But some of the takes I had were definitely, like, very they escalate over time. So it was like, it's nice to know that there was a reason behind it and that I wasn't like, I thought I was crazy or something. So it was super helpful, I guess, with,

Michael Leopold: 8:00

yeah, definitely, definitely not crazy, very, very normal thing that's like, a common childhood diagnosis, and yeah, and a lot of people have it very research, but I can understand like, yeah, when you wouldn't know, you didn't know what you had, and it can feel kind of alienating. And just like, Why? Why? Why do I do these things, like these twitches and stuff that no one else seems to do? Did you disclose after that to your friends and stuff at school?

Sree Lakkamraju: 8:24

Not exactly. Because while I was still processing this whole thing internally by myself, I wasn't ready to share that other people, because I still hadn't accepted completely. I think I mentioned that example to you last time we talked, it was about that teacher I had, obviously, I'm not gonna name who was, but when I was in high school, like before I transferred, she called out my takes in class. So and I had, like, a lot of friends in that class as well. And having all these students around in the very stressful environment, it was already a very stressful class. First of all, it was like it was hard, and then having her say that, and I feel like it was very unfiltered. I think it could have been handled a lot better, a lot more sensitive, because clearly she I think she knew something was not like it was something was off, or there was something there, you know, like disorder, but she called it out. I feel uncomfortable because I didn't know what to say. It was like, a few days after I got my diagnosis, so I blanked out, like, no, no, stressed out. It's fine, like we don't have to talk about it. I just walked out. And it was after that I just never really wanted to step in my classroom again. It was really, oh,

Michael Leopold: 9:34

that's tough. No, it's tough to have those experiences where, like, you're kind of outed by it, you know, or for it, I definitely can relate to it. And also had some experiences of just teachers sort of telling other people behind my back that I had Tourette and, like, disclosing it to students. And I was like, I didn't tell you to say that or give you permission to say that, but you know that unfortunately does happen sometimes. And yeah, so eventually you got involved with njcts. And I would love to hear about that. How did all of that start?

Sree Lakkamraju: 10:03

I started working with Ng, CTS and TA, all around the same time, I think, that summer. So it was probably like three, four months after, I think it was in May. I talked to an adult in my life who, I think I forgot how the conversation came up, but I think he was just wondering, get to know me better. And I explained that I'd had Tourette syndrome, and I again, was still very new to understand this whole thing. So I had not even, like, touched that, like, I hadn't talked to anyone about it, hadn't done any research, like, maybe, like, one Google search, like, what is Tourette's Syndrome? And that's it. But he told me that it was my superpower. He definitely knows who he is, but it was my superpower. And I thought, that's actually like He's crazy. He's so insane. Why would someone say that? How am I supposed to turn this thing into my superpower? He told me you should look up some resources or like communities you can get involved with. And he referenced me to dress Association America and New Jersey Center for Tourette's Syndrome. And thankfully, New Jersey has such a great community and support system. I don't, like a lot of other states probably don't have that, but I was really lucky to find ngcts, and then I kind of just like, filed on a rabbit hole. I applied for, like, the youth ambassador position. I filled out up all the forms and surveys for NGC Ts. I applied to be on the youth council with the other kids, and then to be an advocate and give presentations at schools, colleges, hospitals. So that's kind of how I got started. I did, like an intro webinar for Taa. It was in the New York chapter, like, where you're from, yeah,

Michael Leopold: 11:37

well, and you've done a lot, just so our listeners know, I mean, you're a member of the njcts Youth Council. You're a youth advocate for us. You were 2024 ta youth ambassador, so definitely a pretty robust like volunteering experience with this and advocacy work that you're doing. And it's incredible to see that just with your diagnosis being so recent, and I know you got started with some of this work a little before that, but it's great that you've been able to really own it like as your superpower, and and I want to to focus on that a little more after the teacher made that comment to you, or the adult in your life that made that comment, have you since then, like, internalized it more or analyzed it more. Like, do you see your your your Ts or your neuro diversity as a superpower? I

Sree Lakkamraju: 12:19

definitely would, because I think while there are definitely still struggles with the actual, like, physical aspects of Tourette Syndrome, of course, like, I still have really bad takes, I still have to ask, like the nurse, can I please have, like, this class of I really cannot focus, like, my vocal takes, really bad. But at the same time, I've grown so much, like my personality and who I am as a person, because I also that's when I started, like, apply, I think applying to private schools. So my personality before and after. It seems kind of weird, like how you correlate the two, but for me, I know it's a very big difference in, like, how I spoke to people, how I came off with public speaking, communicating, like my thoughts, because I think the Tourette Syndrome gave me a lot of clarity, lot of confidence with who I was. So, like, I just kind of it was a whole shift for me. So having to, like, go out, do the volunteering by myself, figure out what I want to do. And also this is, like, junior year of time when people are, like, doing college stuff and, like, you have to kind of take charge of your own life. I just think that whole time, like, I changed a lot as a person. That makes sense so and that's all only because of the Tourette Syndrome diagnosis. Like, there's, I'm pretty sure there's no way this would have happened if it worked for that, because it was like, Wow,

Michael Leopold: 13:41

that's wonderful that it's led to all of these, like, tangible benefits and just like your own kind of personal development and finding, like strengths in yourself. I mean, definitely advocating is great, and not everyone can do that. I think, you know, there are types of just like, that's not their way of contributing to the Tourette community or to and that's fine too, if people that don't like the public speaking aspect or or, you know, whatnot, but I think for those who do that, it can be really, really empowering. I mean, now let's talk about today. Now, so you gave a presentation to your sounds like a really big audience. Yeah. How did that go? It

Sree Lakkamraju: 14:15

was good. Honestly, I was really proud of myself, because a lot of stuff that I'm saying now I referenced last year in a contest that I did at school, I talk about Tourette's, and I got, like, first place in that. I was like, huh, thank you. It's

Michael Leopold: 14:28

a good, like, evergreen topic you can use if you ever need, like, a speech or a college essay or something like, oh yeah. It's a good one to go to. It's

Sree Lakkamraju: 14:35

like, something you're truly passionate about, you know, because also, I love volunteering, like, I feel like the whole like, volunteering advocacy thing, like, it all stemmed from stuff I was already really into, but it just like I needed another push. Because it was, like, that's, I don't know how to explain, it

Michael Leopold: 14:50

such a great, genuine outlet for that, like, just, like, very poor to us, yeah, that makes a lot of sense. It's like this

Sree Lakkamraju: 14:57

passion you get to help people with a genuine. Been caused, and you get to see concrete change every day. But yeah, today's speech, I kind of just, I don't know, it took me, like, an hour to write it. I've been, like, because I've done so many of these, like forums and speeches and like presentations for like NDC now, yeah, nature. So like, I bet, yeah, it wasn't, I wasn't even that scared like to speak because, I mean, it's like my whole school so I was, I was a little nervous, but right when I was talking, it's like I felt so confident, so at home, almost like I just imagined that I was talking to, like people who I didn't know, giving a presentation for the first time, almost informing them, and talking about my life experience and giving them my message. I was talking about, like, the only thing to fear is fear itself, and how you should, like, take charge your life. Don't like push yourself past exhaustion. It was something like that. But

Michael Leopold: 15:51

that's great. Well, I'm sure it resonated well with the audience. Yeah, no, when you started doing this work, the advocacy work, and particularly the public speaking around Ts, was that a challenge at all, or did you just kind of fill those shoes relatively effortlessly? I

Sree Lakkamraju: 16:06

don't think it was much of a challenge. Because, again, as I said, like, I also started playing for private schools around time, I started advocating so that I had to do a lot of speaking for these interviews, a lot of talking and like, kind of like connecting to different people. And just during that whole time, I think a lot of the skills I developed for presentations I built myself, so I feel like it wasn't that hard of a transition. I really enjoy speaking. It feels very again, empowering. It's fun too. It

Michael Leopold: 16:37

is, it is, and you're very active in your high school. I know you're doing news, you're on the newspaper staff, you're a tour guide, and then you do lots of volunteering. Also, I know you've done fencing for eight years now, and I'm very curious to hear about that. How did you begin fencing? So

Sree Lakkamraju: 16:53

I was kind of like, it's funny, it's like, a backhanded compliment. And so my dad told me, my daughter definitely can't handle, like, all these rough sports, like soccer and field hockey and, like, she she can't handle that. She's too scrawny, so I'll put her in fencing. I was like, Oh, thank you. I thought fencing was like, no painting offense. Like, I don't know what I'm Oh,

Michael Leopold: 17:15

painting fence. Yeah. I mean, that's a very literal way of taking it, that that's fair

Sree Lakkamraju: 17:18

enough. That was like, seven. I was so, okay, seminars. Don't know what that is. Yeah, I really like fencing at the time because my dad was super involved. He was really, like, always there for me. And also my tics weren't very present. When I was like, seven to nine or 10 years old, I was like, pretty much non existent. But then I think around when I was probably 12 or 13, that's what I really sort of noticed. Like, I don't know if it was a mental thing or, like, I don't know placebo effects that we call it, but I noticed that we had things called bout so that's when you're, like, fencing another opponent, you're on a strip. You have to be very in the moments, like, obviously, to hit them and get points, you know. And then I noticed that whenever I was in training or practicing, like it's very rigorous, like it's tiring, it's taxing, I would always look to the side or like, I get distracted and like my take like I knew it was happening too. I was very aware of it. And this is kind of like in the time where I didn't know what Tourette syndrome was, and then I found out what it was. And my coach, he noticed, and he didn't let it go unnoticed. And that's not his fault, because he wanted to know, like, Why is his fencer? Like, getting struck, and he wants to help me, but I didn't want to tell people, you know, because nobody there knew I had threats. So whenever I was in a class with him, he'd stalk and, like, demand I explained why I wasn't looking at him, so I didn't know what to say, and it was not very good for, like, that environment. And then eventually, when you actually had to go to competitions, you can't fence if you're, like, looking there, because they're gonna take you. You're gonna, like, they're gonna miss something. Yeah, yeah. I've also fallen a few times too. Like, it's, it's kind of dangerous at that point, because, like, you're holding a sword and you're taking a law on a strip. So, yeah, I had to stop in sophomore year. It's really sad. But,

Michael Leopold: 19:05

oh, that is, that's a bummer. You know, I was, I was hoping you tell me that, like, oh, you know, my ticks disappear when I'm fencing. I'm so we in the zone. I'm so focused. And a lot of you know, you get those activities where that happens, but you know, not for everyone. I had a similar experience. I did a track and field in middle school, and I dropped out of that. I was trying to do hurdles, and I had, like, some leg ticks where I like, slide my shoe, my foot on the ground. Yeah, it killed my time I was it was awful, because I would like, trip myself, or just, like, at the very least, it's going to delay me, because my all my leg ticks. And eventually got to the point where I was like, You know what? I've got other activities I enjoy. I'm just, I'm not going to do this one, and so I left track and field. But that happens. I think it's a matter of finding, you know, there's enough activities out there you find what works for you. So are you still involved in fencing then, or are you more or less moved on to other things? Um,

Sree Lakkamraju: 19:55

I mean, it's kind of like on my school, we don't have a fencing team, unfortunately. But the first thing, when I got here, I the first person I went to, I asked, like, Do you have a fencing team? And you don't have a fencing team? Can we please start a fencing team? Because, like, I was still determined to get back into fencing because, also I go to boarding school, so I can't go off campus, drive for like, two hours a day, three hour practices three times a week. It's just not practical. But we have a fencing physical activity that I did in winter. It's like it was an hour of fencing made three times a week. We did some bouts. It definitely wasn't the same, of course, like, in no way, shape or form. I started missing my coach and with my friends from fencing a bunch. But it felt nice to at least kind of like, hold my stuff, get to see my fencing bag, be put to use again, like, you know, shake off all the desks. So it's nice, but I probably will do it again in college. I'll figure out something with my takes. I'll like, meditate, do whatever I need to do, but I really want to start fencing again in college. So

Michael Leopold: 20:53

makes sense. I mean, you'll be at New York University. There's no shortage of extracurricular activities at it, really, any college, usually hundreds of student groups. So you, you know, there's something for everyone. And actually, speaking of other activities that are out there, I know you were at Massachusetts General Hospital doing some bio, bio research recently. You want to talk to us about that and how that all came about? Yes,

Sree Lakkamraju: 21:14

so I did this program at my school called Advanced Research Symposium. It's summer signature program. So we have two. One is for science. One is for more like free, not freelance, like creative humanities, to be able to volunteering. Business, it's a bit more open ended. But the science one you're supposed to apply to in sophomore year. Obviously, I wasn't there in sophomore year, and it's a very rigid structure, like you would have to spend six weeks on a college campus, work with a professor at a lab, and with all the coursework I was taking on as a junior, like getting used to the transition field hockey after school, I was very stressed out already by myself, so I didn't want to. We decided not to put myself in that program. So I've chose the more like open one, which is kind of hard, because I was the only science student, I think, in that so it was I had not a lot of structure, and I needed that structure, which made the internship process extremely, like arduous for me. So I had to send, I think, like, dozens of emails to different professors universities asking, there's a cold emails, Hey, I saw that you were doing this lab, and I spent a lot of time like Googling them, and like finding all the research they did, and like asking specific questions, like, Oh, do you know about like, deep brain stimulation? I thought this was really interesting. Can you please tell me about like, this pacemaker? I was like, I had to do all this for 20 professors, and then I ended up getting a lot of responses. But the thing is, with research, I think because funding is limited a lot, sometimes you always get the opportunities. And while they were very interested a few professors, they just physically could not, like, have students. They can't take students in his interns. But luckily, I found Dr Erica Greenberg at Massachusetts General, and she actually one of my friends who I met on the DC trip for Taa. He's actually, like, one of her patients. So we were all one day, and I think we both brought this up, and I was like, oh my god, yeah. Like, we're interning with the same person. Was like, that's crazy, because she only had pre interns. So I did some research there. Again. It was it was difficult. I can't say that it was this experience I'd like it to have been, but I did learn a lot. I learned about the research process with this librarian of the Harvard, Harvard catalyst library, and then I went through some of the old students projects I learned about different like studies, demographics, kind of did my own research there. Did, like a little summary presentation for her, and I organized him her OCD Tourette Syndrome slides, because she's a presenter too. So we just kind of had to do that for the summer. So what

Michael Leopold: 24:00

was your research specific to Tourette OCD and that that ballpark?

Sree Lakkamraju: 24:04

Yeah. And also, I had to watch a lot of her webinars, and I had to read some of these slides while I was organizing them. And it's a huge database. It's like I got access to different parts of the hospital's account because they did as an intern, like it was a very long process, because obviously there's other patient confidentiality, and then the records. And I'm I was doing this virtual too, and they don't take in person. But this, it wasn't a program. It was just like, her really taking us, like, for her own like, she was kind enough to do that. So again, there were a lot of it was a lot of loose ends, but yeah, any

Michael Leopold: 24:43

interesting findings that you had that you want to share with our listeners? Anything that you know, and it may not be relevant to this, it may just be more you're organizing the information, making it a report. But did you learn anything

Sree Lakkamraju: 24:54

new? I definitely learned something new, but it was like almost a year ago. Now I have eyes being full of. On it for my class, I could definitely pull that up. It's like 1500 words. I don't know if I can pull something on top of my head. I mostly just studied different countries, I think, at one point, and how like, the comorbidities I'm pretty sure affected these populations and in Tourette syndrome, and it was specific studies, like in different experiments for each population. That's kind of like what I was doing. And I had to summarize these and make like a hypothetical experiment. It was, yeah, I wish I could pull give something more specific, but, oh, I'll go. So

Michael Leopold: 25:38

now you've got college to look forward to. Well, I guess you got to get through the rest of high school here, but I'm assuming that all goes well. We got another what, month or two of it. What are you most looking forward to when college begins? I'm

Sree Lakkamraju: 25:49

very excited to explore New York City, because I've lived in the suburbs my whole life, and part of the reason why I chose NYU was because, like knowing me, I probably stay inside my room for most of my college experience, hang out with my friends inside, watch a movie. And you can't really do that in New York. You have to go out in a value hop to explore, forge, like, your own path in the city. So I was like, this is like a way for me to get outside the box, meet more people, expand my horizons. So I'm really excited to just see what NYC has to offer. That's great.

Michael Leopold: 26:25

I've been living here since 2016 it's a good city. Always something new going on, and, you know, various neighborhoods to explore and stuff to do, but I definitely recommend it. But you know, I think everyone kind of finds their own path here. And, you know, find, find, also a new friend group too, which can be a transition as well. How are you feeling about around that, making new friends? You know, for me, I think I was, I was optimistic and excited when I started college. I think I was like, Oh, this is cool. I get to, like, meet new people, and I like that. I was always kind of extroverted, but I could see that being also a challenge for some people, and something that you dread. It's like, oh, I'm losing my support system that I've taken years to develop now and got to start from scratch. I'm leaving the state for college. What are your thoughts on that? So

Sree Lakkamraju: 27:08

I actually, I was, like, talking to my friend about it the other day. I feel like, now, because social media is such a big thing, people are obviously connecting, like, on Instagram and stuff. I already have, like, we have all these NYU pages and like, people are posting on and looking for roommates. I got added to a group chat, like random NYU one, and people started talking, are you guys going to like the student? Like, admissions event has to be I'm not ready to socialize yet. I haven't even graduated high school. Like green. Calm down. I was so scared. But people like, I know one of my friends from njcts, he actually like connecting me to another NYU student. So I was like going back and forth, just talking, like with them. So yeah, I've talked to other students online. We're kind of like getting into that rhythm. But also I have a gap semester, so I'm going january 2026, so I have like, seven months to enjoy my solitude and at home. So if I immediately find a friend group, then that's great. If I don't, that's also fine, because I'll have myself, and I'll, like, slowly build that so I think, yeah, support system wise, I feel like I have a pretty good one, even though, like, I won't see them all, though, often, but I'm also close to home. It's like, an hour away, so I won't be

Michael Leopold: 28:20

home. What was it like disclosing your Tourette to your friends once you got that diagnosis? How was that experience?

Sree Lakkamraju: 28:27

It was funny, because there were two vastly different experiences at my old school, my new school and my old school. Because sometimes, like again, people don't really realize what they may say could be a bit hurtful. It's unintentional. Course, like my friends, they would tease me about my takes say, Oh, that was so funny when you walked like that, or like when you were looking around, looks like you have so many like thoughts in your head. And then we were in a big friend group one day, I think, and I just said something. I was like, Oh, you guys, by the way, I have like, Tourette syndrome. And I told my best friend about this earlier, like, on text, and I gave like, a full rundown, and a lot of them were, like, very apologetic, like, I'm sorry. I didn't know that. I was like, It's okay. It's really okay. But I did. They noticed for sure that I had tics, but here my new school, I think I got it under control for the first few months. I think I was just a lot more calm. And I remember having conversation with my roommate the for the first time about it, or, like one of my friends, and she was like, I had no idea that's Rett syndrome. Like, I know what it is, and I know, like, I've seen people with tics. I know someone to hear us tics, but I've never seen you like Tic before. That's crazy. She's like, Thank you for telling me this. So no one here knew, I think, unless, until I told them, like during all these speeches and workshops like helped run. But they're everybody kind of news. It's

Michael Leopold: 29:51

always peculiar, because I get this too a lot. They're like, if I disclose to someone, or back when I would disclose to people who had known me for a while but just didn't know I had trust. They're like. Surprised. And it's like to me, my trust feels very like, I don't know I, I probably I take a couple 100 times a day or so, like, depending on the day, but, but like, it feels like a decent enough, you know, frequent enough thing that's a part of my life. Like, how do you not notice it? But I don't know. I There's also maybe people are being nice and maybe they just noticed something, or maybe they didn't. Maybe everyone's just focused on their own insecurities, their own, just trying to their own thing, their own, trying to get through the day. And yeah, so we don't always, we're not always as hyper focused on others as as we could just be focused on ourselves, I think a lot of people, but, but no, that, that's definitely something I've noticed. I The interesting point you you brought up around like humor and people like your your friends would be like, Oh, we thought it was funny that you did that, like whatever thing. And there's a balance there. I feel like, like so many, I've heard so many people with Tourette say that humor is the best medicine, and that, like, they've really embraced humor, and that they've integrated that their tics and, you know, and like, into their sense of humor. And I think there can be something very empowering about it. There's also then the risk of, like, people, yeah, like thinking less of you, and like, it's a source of making fun of you, or that kind of thing, because they're, they're laughing at something you're doing. So I think it's like, it's a balance there. And it can be like, a sensitive topic, is that something that you have any thoughts on around, like, how you've, you've integrated, like, your humor, what that, you know, how that comes up against your tics or, or is this not really a thing? I don't want to force any, you know, a theme here, if one doesn't exist, I

Sree Lakkamraju: 31:33

think I haven't had too many, like, strange interactions, or, I guess, interactions with my friends directly about my tread syndrome, like, I've talked about it with them, but I think I the few interactions I've had have been just very plain, normal. But if I think people, the other day, I was talking to someone in the bathroom about it, actually I, like, ran to someone, and we just, we're just having conversation, and she was being very respectful, like, Oh, is it okay if I ask you about your Tourette's, like, I was just wondering, because, like, she was kind of asking a little advocacy experience, even when she asked about very sensitive parts, and she was again asking, are you comfortable with sharing this? I'm like, Yeah, of course, if I was sharing a very vulnerable part about, like, my tics or something that I don't usually share with people, I didn't notice. I was laughing it off, for sure, and I was like, Oh no, yeah, it's not a big deal. Like, it's like it was a long time ago, or I grew past that. I think that's the healthiest way for like, again, my opinion, for me to do it. But usually that's only if people are being respectful. Someone was being disrespectful. Again, I think I mentioned there was this one interaction I had where someone was, unfortunately, very blunt about it, and they did not approach asking me in like, a mature way. It was a very awkward situation for everybody there. I know what to do, so I just kind of was like, yeah, no, i Hey, I have Tourette's. You're right, I have Tourette's. I don't do this tech. I'm not going to be cursing. I'm not going to be shouting. No, I will not do what you're telling me to do, but I can tell you more about it. That's I just kind of switched to like advocate mode and listen all right, on to like the app at all. But it was kind of a bit more serious when I said it was rough. So I'm like, let me address this to make sure they don't do this in the future, because there are several people who I know, like, who also have threats and imagine they had the same interaction. I don't think it'd be the same. It'd be a bit more. So that's why

Michael Leopold: 33:30

I brought this up, because I think this is a, it's an interesting topic that, like, I think people have to decide for themselves where they set that boundary, and also, like, where they want to, yeah, where the line is in between. Like, yes, you can laugh with me, or you can laugh at my tics, but also, like, you need to be respectful of it and and I think that's it's complicated, and I think that's something kind of, as we go through life, we figure that out, and, you know, hopefully eventually surround yourself with people who are always respectful, so you don't have to worry about it. But I think when, like, you're younger, and especially like new to the diagnosis, I think that's something that can come up, and you kind of kind of grow into that, and it makes sense over time, but I do think that's something a lot of people kind of grapple with now, when it comes to advocating for Tourette, have you met a lot of other people with with Tourette? Like, when you went to the conference, TAA, did you have that, that chance? Yeah,

Sree Lakkamraju: 34:19

I have, like, I should have a picture. It was really funny, because I don't know who thought it was a good idea to put 64 kids with Tourette's in the same room, but I remember it was, it was cute, because all of us, we started kind of making little friend groups. It was a little sad, because I did notice that the final friend groups I had, a lot of us did have mild dirt tics, I would say. But that's just because, again, it's a very over stimulating environment, even for people who have a lot of tics. And a lot of us, at the end today, like we were all sitting in a circle. I remember, this is the first time the conference. We're all getting to know each other. We're all super excited. But there's a lot of us, different ages, different. Severity. Like, we're on different spectrum levels, and we also have comorbidities, so we're trying to, I think we're traveling charades or something. It did not go well. It was so chaotic. And I remember, like, the way I made my friend group, which I have now, I think we were slowly started, like, making eye contact. Like, are you over stimulated? Yeah, I'm over stimulated. Let's go like, you're one

Michael Leopold: 35:20

of my people. Let's have a quiet moment together. Moment together. Yeah, it's

Sree Lakkamraju: 35:24

cool, though I got to, like, I think was also a good experience for me, because it made me a lot more aware. Like, I think I wasn't around a lot of people before, like, who had tics, because everyone had very mild ones at Ng, CTS, but I think one person had a tic where, like, they bang on the table, and I still got scared, and I wasn't used to it. And I was like, Oh my God. Like, why'd they do that? I was like, they have to rest syndrome. Of course, they're gonna like you, I need to get used to this. So it was a bit of awakening.

Michael Leopold: 35:51

It's funny because even within a couple days, like you get, you do acclimate to it, General, generally quickly, like I find from like the first day of a truck conference to like the last day. Like, how much I noticed the tics, and I just, I get distracted by someone's vocal tic or something on day one, by the end, yeah, it's, you're just kind of like, it's just another sound someone sharpening their pencil or closing the door or coughing or something. It just kind of blends in with, like, I mean, there's obviously exceptions and different tics and stuff, but for the most part, I feel like it's such a I don't know. I always feel like the the conferences and Tourette events are such a great example of, like, how the world should be, like, the way that everyone's just cool about it, and you tick freely and no one cares. And it's just such a great case study on, like, the kind of world I want to I want to build where like, and the world I want to live in, where you can just tick and no one cares. And after some time goes on, they may or may not even notice it anymore, depending on, you know, if it's just like a simple tick. And I think that's it, like, let ticks and Tourette and all of that just kind of blend into the normal sounds and movements we see in our everyday life. And we don't need to always draw attention to it, or, you know, unless we choose to. But do you find when you're speaking with other people, with Tourette, do you are there any tips or advice that you tend to give often? And I know where you're kind of flipping the the board here now you're like the the mentor. What would you say to someone that's recently diagnosed, or, you know, going through a tough time, any tips or advice that you would give to them? So

Sree Lakkamraju: 37:19

I'll get to both of them, someone who's talking to someone who's been diagnosed and someone who's been diagnosed, for someone who's been recently diagnosed, definitely, I think, if you're looking for a community, seek out njcts And if you can ta both very great support systems. I haven't utilized a lot of Ng, CTS resources for families like I think, the camps, the webinars, I've been to one or two, I think. But for someone who's new, and if your family is trying to get involved, definitely go to those, because a lot of it is accommodated by Ng, CTS. We're so fortunate to have that. So there's that. And if you're trying to figure out, like your social life, how to talk to your friends about it, if you feel like you're comfortable with your friends and you can trust them to understand them. Maybe have, like, a quick talk with them, kind of have that one on one, like, hey, like, I have Tourette's, you know, I got diagnosed, if this is how I feel comfortable with you responding to my tics, or, like, you can say this, or you can laugh with me, or just don't say anything at all, don't acknowledge it. I think it's important to have those conversations, just to make sure it doesn't get in the way of anything. And then also make sure, like, you figure out your family dynamic, get the treatment. You need medication if you need first, like, an intervention with, like, see the therapy, or have a reversal. That was a lot of people use. I know it helped a lot of people so that I recommend you. Did you?

Michael Leopold: 38:41

I was gonna ask, did you do that reversal or CBD? Okay,

Unknown: 38:44

you didn't have help. But

Michael Leopold: 38:47

I'm gonna have you on another episode, if you're all right. I'm compiling some some guests to make an episode on CBIT, and we're finding some people who that had a great, great success with it, and other people that it didn't work out so well with, and a dialog so great does it? We need people who it didn't work with, because we have a lot of people that loved it. So I might contact you about that. Just stay tuned. But all great advice. I think it's about like finding out what your needs are and then getting those met, you know? And it starts with that diagnosis, and then from there, you know, what do I need in the classroom? What do I need socially? What I need at home, and making sure that you're that you're supported, just, not just with the Tourette's, but but other co occurring conditions that are going on and and also knowing that this is going to change, and it's a dynamic thing, which is kind of, and that's okay, you know, it's, you're going to be all right. It's not going to, you know, it's not something that you'll die from. It's, it's a we can, we can really, I think there's a very different tone in going to like a Tourette Syndrome conference versus going to like a cancer conference or something just like the vibe in the air is different. And I think, you know, I think for us, it's, it's a matter of finding ways to live productive, meaningful lives. And there's lots of ways to do that and places. Njcts can support you on it. So definitely. Sri, any other ideas, thoughts, last minute, kind of burning pieces of advice you'd like to give?

Sree Lakkamraju: 40:10

Oh, I did say that if you're talking to someone who has threats, I mean, I feel like it's pretty straightforward, just treat them how you treat any human being with respect, kindness, patience. You know, I don't think it should be that hard, but that's I don't know if you I'm not going to tell everyone to go on this crazy like advocacy journey. That's not what I'm telling you. They're into. But if you are interested in volunteering and speaking and educating others, and even, like, pursuing something like this when you're older in college, like, kind of how I'm interested in I know some other people I know are also interested in this, like neuroscience and stuff. I would definitely recommend it and giving it a shot, because I think it's just nice to have like, this focus or drive in your life, because it kind of centered me a lot. Because, yeah, I was, like, doing my own things, going to school, like living my life, but I feel like this gave me a lot of fire. It was something I was really happy to be a part of. So I think I desperately needed something like that, and this came along.

Michael Leopold: 41:15

So yeah, it's, it's core to who you are, and also you meet good people with it. You know, there's a lot of great people in the community, and I've met a lot of wonderful friends of mine. Wonderful friends of mine through this. So all of that as well. Sure, it's been great having you on the uptick, and I wish you the best of luck with your senior year of high school and and when you're in New York City for college. So thanks so much for for being here, and thank you. Thank you for listening to the uptick brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life you