S4E12: The Teacher Who Was Sent to Rehab for Being Sick

Imagine falling asleep for two months straight — losing your memory, your personality, even your sense of time. That's life with Kleine-Levin Syndrome (KLS), one of the rarest sleep disorders in the world. In this episode of Narcolepsy Navigators, hosts Kerly and Sakhara sit down with Saphronia Young, a former elementary school teacher from Texas living with both KLS and Narcolepsy with Cataplexy.

Saphronia opens up about her decade-long fight for a diagnosis, the school district that sent her to an alcohol treatment center instead of supporting her, the family nickname "Lola" for the person she becomes during an episode, and her honest, unfiltered answer to the Red Button Question: would she push the button to erase her diagnosis if she could?

This is a conversation about resilience, faith, and what it costs to be misunderstood by the people who are supposed to help you.

About The Guest

Saphronia Young is a former elementary school teacher from Texas living with Kleine-Levin Syndrome (KLS) and Narcolepsy with Cataplexy. Diagnosed with KLS in 2016 after years of misdiagnosis, and with narcolepsy just three years ago, Saphronia now works as a virtual tutor from home, where she can manage her episodes on her own terms. She's a mom, a fighter, and an advocate for greater awareness of rare sleep disorders.

Transcript

Saphronia Narcolepsy & KLS

[00:00:00] 

Introduction

[00:00:00] Kerly Joy: Welcome to Narcolepsy Navigators. I'm Kerly your host. I have narcolepsy type one, 

[00:00:05] Sakhara: And I'm Sakhara your co-host. And I have narcolepsy type one as well.

[00:00:11] Saphronia: And I'm Saphronia and I have Klein Levin Syndrome and Narcolepsy with Cataplexy.

[00:00:15] Kerly Joy: Thank you. Welcome.

[00:00:17] Kerly Joy: That's a very pretty name. I have never heard it before. Sakhara, how was your week?

[00:00:20] Sakhara: Our weekend was pretty good. It wasn't really long, I relaxed pretty much. I did some odd jobs this weekend, babysat went to a dance show, so it was pretty cool. How about you? 

[00:00:35] Kerly Joy: Yeah, I was home. I didn't go to church. On Saturday I stayed home. And then in the evening I've been on BeyondSleepy Conference, so in Seattle. And Fred is there, at our booth supporting us and representing us. I was watching online and and everything. That's what I was doing and try to make connections online. 'cause you, when you [00:01:00] on there virtually, you can talk to people. So I've been trying to talk to people and see if they wanna share their story and things like that. And Saphronia how is your weekend? 

[00:01:13] Saphronia: It is going, I've been baking in the Texas heat spending my whole weekend at baseball. But we are on our way home now. We just lost our first game in the bracket.

[00:01:24] Kerly Joy: So how many brackets do they have? 

[00:01:27] Saphronia: They had a game Friday and then Saturday and then the bracket was today. So they lost the first game. So they don't play anymore for today. But if they would've won, they would've played two more times to a championship. 

[00:01:41] Kerly Joy: That's their main sport that they do is baseball? 

[00:01:45] Saphronia: Yes. My son, he plays baseball. 

[00:01:49] Kerly Joy: Okay.

[00:01:49] Sakhara: I went to a baseball game when I was, younger. And I live in Philadelphia, so it was for the the Phillies [00:02:00] and I was younger and I didn't realize that the game was so long. 

[00:02:06] Saphronia: They are 

[00:02:06] Sakhara: long I I'm there with my siblings and my father and we're just like, okay, when is this game gonna end? This takes four hours, and I realize it's not like basketball or like football, yeah, it can be exciting, but, I guess it just depends. 

[00:02:26] Saphronia: It's definitely a slower pace for sure. 

[00:02:29] Sakhara: Yeah.

[00:02:31] Saphronia: Honestly, I can keep up with it. 

[00:02:33] Kerly Joy: I learned something new today. I didn't know that. I thought it was similar time to football, like a quick game.

[00:02:40] Saphronia: Oh, no, it's very long.

[00:02:42] Kerly Joy: So Saphronia Does that say it right? Yeah. 

[00:02:45] Saphronia: Yeah. 

[00:02:46] Kerly Joy: Okay. So Nia could you introduce yourself to everybody? If you'd like to tell them your name, what state you're residing in your age, if you feel comfortable, and what year you are diagnosed. 

[00:02:59] Saphronia: [00:03:00] My name is Saphronia Young. I am currently in Texas about 30 minutes north of Dallas.

[00:03:06] Saphronia: I am 39 years old, and I was officially diagnosed with KLS in 2016, but I had like symptom ongoing symptoms starting at 2011. 

[00:03:23] Kerly Joy: And you were also diagnosed with narcolepsy. When did you get that one? 

[00:03:27] Saphronia: I was just diagnosed with narcolepsy probably about three years ago. 

[00:03:34] Kerly Joy: Okay. 

[00:03:35] Sakhara: Oh wow. Okay. So very recent.

[00:03:37] Sakhara: Okay. And when did you first start noticing symptoms? Like of the. KLS and Narcolepsy. 

Saphronia's KLS Symptoms Begin

[00:03:46] Saphronia: I started getting the symptoms from KLS. I used to be a teacher. I was a former educator, so my very first year of teaching the end of the school year, I ended up coming down with like flu-like symptoms and I was just [00:04:00] lethargic and sick and brain fog, lots of different things going on back and forth to the doctor and they couldn't figure out what was going on with me.

[00:04:07] Saphronia: I was out of school for like the last couple of weeks of school and I ended up being hospitalized and they told me that I ended up having the Epstein-Barr virus and the cytomegalovirus together. And that's what they claim was the cause of everything going on. But 

[00:04:26] Kerly Joy: can you explain to the listeners, they might not know what that is ?

[00:04:31] Saphronia: I really wish I could explain it 'cause I don't really know myself. Just 

[00:04:34] Kerly Joy: What they told you,

[00:04:35] Saphronia: I guess it's like similar to the flu. And mono, like having the osis kind of some similar to that. So that had me out for a while and I was hospitalized for about two weeks and they were running all different kinds of tests.

[00:04:49] Saphronia: They thought I had Lyme disease. They, they went through every single possible thing that you can imagine. I had a spinal tap done and what have you, and 

[00:04:58] Kerly Joy: Wow. 

[00:04:58] Saphronia: That's all I ended up [00:05:00] finding at that point. But then come summertime had passed by and then the fall of the next school year, I ended up getting.

[00:05:08] Saphronia: Kind of the same thing with the flu-like symptoms and lethargic and the brain fog and all that. And the doctors just couldn't figure out what was going on and why it kept happening or and it was just, it just repeated like every day I would go down with these flu-like symptoms, sleeping for long periods of time, not able to, take care of myself take my medicine, not able to do things for myself or for my son. Definitely not able to work. And this was weeks at a time. And like I said, it was usually, 

[00:05:40] Kerly Joy: So you had it the first year and they said that it was this type of mono thing. If you say again the name of it? 

[00:05:48] Saphronia: Epstein Bar Virus and the Cytomegalovirus.

[00:05:51] Kerly Joy: Okay. So they thought it was that. So then the following fall when it happened again. They thought it was the same thing. Reoccurring that same Epstein virus [00:06:00] coming back. Can you have IP twice? 

[00:06:01] Saphronia: Weren't they weren't sure at that point. 

[00:06:03] Kerly Joy: Oh, so they were sure the first time. The second time, yes. Now this was a different virus, but not the previous virus. Yes. And so when it happened again, what were they saying then? 

[00:06:15] Saphronia: It's really hard to try to go back and remember all that information because when I'm in the episode, like I don't really remember very much. But I know that I was just, they kept misdiagnosing me with stuff that I didn't actually have, like the flu.

[00:06:30] Saphronia: I didn't have the flu. I didn't have, I don't know, whatever they were trying to diagnose me with because they couldn't find it and they couldn't get me any test results. They were inconclusive. 

[00:06:40] Sakhara: Oh. 

[00:06:41] Saphronia: It was just becoming a repetitive cycle, like I said, at the beginning of the year and the end of the school year and that.

[00:06:48] Sakhara: And did you get. Five years and Wow. Five years. And at that time, did you get a second opinion or a third opinion? 

[00:06:59] Saphronia: [00:07:00] Yes. I feel like I saw almost every doctor in DFW. Like I went from hospital to doctor to specialist, to, it was insane. Like just to experience having to go through all these different doctors and having doctors tell you, I don't know what's wrong with you. There's nothing else I can do for you. You're gonna have to see somebody else, or, it was a lot. 

[00:07:20] Sakhara: Wow. Yeah. That definitely sounds like a lot. 

[00:07:23] Kerly Joy: Who was supporting you through this at this time? 

[00:07:26] Saphronia: My parents. 

[00:07:27] Kerly Joy: Okay. 

[00:07:28] Saphronia: And I ended up, I think I was already living with them at one point. I had moved out, but I think when I first initially got had started having the symptoms, I was already living with my parents. So that was pretty helpful. They were able to take care of my son and get him back and forth to school and I didn't have to worry about anything like that. So that was helpful. 

[00:07:48] Sakhara: That's good. 

[00:07:50] Kerly Joy: So then how was school with this, because you had the episodes not always in the holiday time. It was still part of school year, right? [00:08:00] 

Impact on Teaching Career

[00:08:00] Saphronia: Yes. That is a really hard topic for me, a super hard topic because I've always wanted to be a teacher. That's the only thing I've ever wanted to do was teach and. Everything started happening that last year of my very first year of teaching. And I came into teach, I went into teaching perfectly fine, perfectly healthy, no problems whatsoever.

[00:08:23] Saphronia: And then all of a sudden I get this. And then I just, was missing weeks and weeks of school at a time. And the district was not very supportive at all. I would have to get sub after sub. It took them a long time to get like a long-term sub so it would be the same person in the classroom.

[00:08:44] Saphronia: So they weren't really understanding or they couldn't really figure out how to help the kids in the classroom while I wasn't there, if that makes sense. They didn't really have a plan in place because they didn't know when I was gonna go out, how long I was gonna go out, [00:09:00] when I would be able to return, so on and so forth.

[00:09:02] Saphronia: But I had some, I had a really hard time with the district. With just figuring out the KLS and trying to figure out what was wrong. Like at one point the district, pretty much, they didn't say it, but you might as well have, they might as well have said it. They ended up making me go to get a fit for duty assessment done at an alcohol abuse center because they thought using alcohol.

[00:09:26] Saphronia: I didn't know. My, my doctor asked my doctor had released me to go back to work, but before they would let me accept me back into school. The school told me that I had to get the fit for duty assessment done at this at the ante center. And my doctor told me, why are they sending you there?

[00:09:43] Saphronia: That's an alcohol abuse center. And I had no idea that's what it was at that point. Oh wow. But I went and had that done and after that they let me go back to school. And then I had another episode or two and they were pretty much [00:10:00] like. Everything's fine. You can go back to your classroom and you get better and what have you.

[00:10:04] Saphronia: And literally like the next day, the HR calls me and they tell me here's your new campus. You need to report there tomorrow. And I'm like, y'all told me I could go back to my own campus and now y'all are placing me somewhere else and I have to be there tomorrow. So it was just a lot of moving, trying to stick up for myself, trying to, keep a positive spirit about everything.

[00:10:25] Saphronia: It was just a lot to the point where I ended up actually resigning in 2022. 'cause it got so bad. Aw, that, huh? Yes, I know. That must have really sucked for you, especially if you really enjoyed teaching, and being, an inspiration to the students. Yeah. 

[00:10:47] Saphronia: That the last year that I was teaching around 20, 21, somewhere in there.

[00:10:53] Saphronia: My biological father passed away, so that caused me to go into an episode. Then [00:11:00] I just couldn't, I couldn't pull it together. So I was going, I was having like back to back episodes at that time. So I was out of school for a very long time at the beginning of the school year. And towards the end of the year, like around April, I just decided one day I can't do this anymore.

[00:11:17] Saphronia: It's not, it's not good for me, it's not good for my kids, it's not good for the parents. And I called my principal and told her I, I'm not coming back. I resign. District was forcing, say so many words, but it was definitely a difficult decision. 

Family & Son's Experience

[00:11:31] Kerly Joy: How old are the kids that used to teach? 

[00:11:34] Saphronia: I started with fourth grade, then I went to first grade, that's when they transferred me to a different campus. And then I ended up teaching kinder. And then second is when I resigned. 

[00:11:45] Kerly Joy: Okay. 

[00:11:45] Sakhara: Oh wow. 

[00:11:49] Kerly Joy: So what was your long, what has been your longest episode that you've ever had?

[00:11:55] Saphronia: I wanna say two, two [00:12:00] plus months. 

[00:12:01] Kerly Joy: Oh, wow. 

[00:12:03] Sakhara: Wow. Is that is that like a continuous episode or just the same? Wow. Oh, I can't even imagine. 

[00:12:12] Kerly Joy: So walk us through that now

[00:12:13] Saphronia: so it starts with me like getting the actual flu and cold like symptoms. Like I just don't feel good. So I automatically have that fear of getting sick.

[00:12:23] Saphronia: 'cause if I get sick, I know I'm possibly gonna go into an episode. So if I got sick and then it's it just goes downhill from there. I go to sleep and it's I just don't wake up. And when I do wake up, I'm like a toddler in a toddler state of mind. I have anger outbursts sometimes emotional.

[00:12:44] Saphronia: I don't eat, I don't take my medicine, I don't take care of myself. I may get up and go to the bathroom. But that's really about it. And I'm just in my room by myself, quiet, sleeping, day in, day out without, communicating with [00:13:00] anyone. 

[00:13:02] Kerly Joy: Wow. So when you like that, you said you sort almost go back into like toddler mode.

[00:13:07] Kerly Joy: So what does that feel like? Are you feeling drowsy? Are you feeling weak? 

[00:13:15] Saphronia: It's definitely drowsy for sure. I can't stay awake. When, like, when I am up, I will literally fall asleep anywhere. If my parents try to get me to wake up during an episode, I will end up falling back asleep. But it's like a constant drowsiness. 

[00:13:34] Kerly Joy: And you won't, you wouldn't be able to like, hold a conversation properly or 

[00:13:38] Saphronia: anything 

[00:13:39] Kerly Joy: that Yeah. 

[00:13:40] Saphronia: No, because I'm like in a child's state of mind, like my whole mental capacity is just completely gone. 

[00:13:47] Kerly Joy: Oh, wow. 

[00:13:48] Sakhara: Wow. I think that's the first time I've heard that.

[00:13:52] Saphronia: When I first, I can remember when I first started getting the episodes, I was trying to go to school. Mind you, I took the same way to school [00:14:00] every single day. And I didn't know I was in an episode. But now I know that I was in an episode at the time, but I ended up crying my eyeballs out because I thought I was lost going somewhere that I would go every single day.

[00:14:12] Saphronia: And I couldn't figure out how to get home. And I have no, I still to this day don't even know how I made it to school that day. 

[00:14:18] Kerly Joy: Oh, you were sleepwalking a hundred percent. 

[00:14:21] Sakhara: Yeah. Yeah. 

[00:14:23] Kerly Joy: With narcolepsy, I've done it so I know it's, yeah. You just, because you're in automatic behavior and you've done that route so many times, that's the reason why you are able to do it. You are able to, you, that's why your feet and your body was able to move. 

[00:14:38] Saphronia: Yes. 

[00:14:40] Kerly Joy: But I guess the trauma of doing that when you are not awake is that if you come out of it a little bit and you become awake, I could see why you would be frightened and be lost because you weren't conscious of what you just passed, so you didn't even know where you are. 'Cause you won't even remember the last road that you just crossed the [00:15:00] street or wherever you are.

[00:15:03] Saphronia: Definitely scary. Like I said, I don't have a good recollection of things that happen when I go through an episode because my mental state is not there. But it's definitely been trial and error for the last 2015 something years.

[00:15:20] Kerly Joy: When you're in an episode and you've been, so when you've not been living with your parents and you've been living on your own what happens like for food and water and stuff like that? 

[00:15:33] Saphronia: Eventually, 

[00:15:34] Kerly Joy: does your body ever wake you to have to drink water? Is that how it works? And it wakes you to go toilet occasionally.

[00:15:41] Saphronia: I'll only wake up to go to the restroom. I won't necessarily wake up to eat or drink anything. 

[00:15:47] Kerly Joy: Oh, so the body doesn't give you a signal to say it's dehydrated or anything like that?

[00:15:51] Sakhara: Yeah. That's really interesting.

[00:15:53] Kerly Joy: 'Cause I can't imagine to go two months without your body saying to you, I need water.

[00:15:57] Sakhara: Yeah. Yeah. That's really [00:16:00] interesting. I wake up in the middle of the night and drink water just to drink water. I wake up in the middle of the night so I can imagine, your body not sending that signal for two months to drink water or, just say I need like your body telling you I need water. I need, wow. 

[00:16:21] Saphronia: My parents would try to force me to drink stuff, but I would take a, literally take a sip and then once they'd leave, I'd just put it back on the counter and go 

[00:16:29] Kerly Joy: sleep. Yeah. So tell us now about when you got diagnosed. What led to that? What was the turning point that got you diagnosis for KLS?

Path to Diagnosis

[00:16:45] Saphronia: My mom actually had to give my mom credit for this because she was watching a show, I can't even remember what it was, 60 minutes or something like that or what have you. And it was a girl on there that had the same symptoms that I was going through. [00:17:00] And it just clicked with her. She was like, this is what you have Klein Levin syndrome.

[00:17:03] Saphronia: This girl does, is doing the same thing that you do. And, I think this, we should go see if we can get tested for this. And then we ended up finding a neurologist. After researching, we ended up finding that I think the neurologist on the KLS website that was actually located here in Dallas. And I went to see him and he was able to diagnose me with KLS in 2016, I think. And that I got that diagnosis based off of ruling everything else out. 

[00:17:33] Kerly Joy: Ah, so he did all the testing and then when he came to the end, then he knew? 

[00:17:38] Saphronia: Yes. 

[00:17:39] Kerly Joy: Oh, that's interesting. So it wasn't from like you telling him how you were feeling and everything and then he was like, oh yes, I know where it is.

[00:17:46] Kerly Joy: I'm just comparing it to your mom, like your mom watching that show. And she's oh my God, yes, you have this, definitely you're behaving like this. But when you went to this doctor, it was different. 

[00:17:57] Saphronia: Yes, all the doctors, they, when [00:18:00] they were completely at a loss, had no idea what to do, where to go, what was wrong with me.

[00:18:05] Saphronia: And I don't know how many times I went to doctor's offices and just cried. I'm like, you can't tell me there's nothing you can do for me. You're a doctor, that's what you're supposed to do. And you're telling me that I have to go find somewhere else or someone else to help me because you can't do anything. So it was a very hard experience traumatizing. 

[00:18:24] Kerly Joy: But when you met the, when you met the neurologist from Dallas, how long did it take him to figure it out? 

[00:18:32] Saphronia: A couple of weeks and only because I had already been tested for so many other things prior to meeting him. So all of that stuff had already been ruled out and we went in there with the information of KLS from my mom.

[00:18:47] Sakhara: Yeah. That's actually a blessing. 'cause I know a lot of people, who, go through some things. You've gone through trying to find a diagnosis. They go to the doctor [00:19:00] and they're like, look, this is what's happening to me, blah, blah, blah.

[00:19:04] Sakhara: And for a lot of them, for a lot of them, it feels a loss of hope because they're like you're supposed to know what's wrong with me. You're a sleep specialist, you're a doctor, you're supposed to know, you're supposed to guide me. You're supposed to help me figure out why I'm feeling this way. And for you to have done all the heavy lifting already, and that's amazing, 

[00:19:26] Saphronia: yes, I think it was because my episodes were so consistent and they were always at the beginning of the school year, always at the end of the school year until they started becoming consecutive. Every other week I was having an episode. So that kind of helped so we could pinpoint what's happening at the beginning of the school year, what's happening at the end of the school year as to why you keep going into an episode.

[00:19:51] Saphronia: And we boiled it down to my stress level. I don't handle stress very well, so stress is definitely a trigger for me. So I try to, I try now to [00:20:00] keep my stress level down to not, go into an episode, but stress is definitely a big trigger for going into an episode. Wow. 

[00:20:08] Kerly Joy: So when you got your diagnosis and you finally told, did you have to do any type of tests, how did they do it?

[00:20:15] Saphronia: No, I don't remember doing any testing right away. 

[00:20:21] Kerly Joy: MLST or any type of sleep test or 

[00:20:27] Saphronia: right away I had what is it? The EEG, the whole thing's on your head. I can't remember what it's called. But I had a home test, a home sleep test done, but that wasn't right away. Okay.

[00:20:39] Saphronia: But they didn't really do, 'cause there's actually no testing for KLS and like I said, because everything else had already been ruled out. That was the only route left to go. 

[00:20:49] Kerly Joy: Okay. So how did you feel, how did you feel when they told you? How did your mom feel? 

[00:20:57] Saphronia: We both felt relieved. I felt like I wasn't [00:21:00] crazy.

[00:21:00] Saphronia: I wasn't losing it. I felt glad to know that I wasn't the only person experiencing this. And there were other people out there like me. And I also felt. Hurt and sad, like why me? Out of, because KLS is so rare, like one outta a thousand people and I'm just that one out of a thousand people that has this rare illness from who knows where.

[00:21:25] Saphronia: So it was definitely a struggle for sure. It still is a struggle today too, but I've learned to cope with it a little bit better. 

[00:21:35] Kerly Joy: And how old is your son? 

[00:21:38] Saphronia: He is 15 now. 

[00:21:40] Kerly Joy: So how did he handle things? 

[00:21:43] Saphronia: He, was little when I first started having episodes, so he didn't really know what to do.

[00:21:50] Saphronia: When I was experiencing an episode, he just knew that I was asleep all the time. And then as he started to get older, he started to recognize signs, like if I was [00:22:00] taking a random nap in the middle of the day, oh she's probably going into an episode and he would know to call my mom. Mommy's going into an episode.

[00:22:06] Saphronia: At that point we were living in an apartment, so he would call her and she would come and pick us up and bring her, bring us to the house or what have you. I remember one time I was getting ready for work. And at that time, me and Christian were still going to the same school. He was in elementary school and I was still teaching and I was getting ready for work, and I got in the shower and I fainted in the shower.

[00:22:28] Saphronia: And I, I don't even know why. I don't know how, I don't know, what caused it or what have you. But I remember laying on the bathroom floor and Christian just bawling his eyeballs, looking at me, asking me if I was okay. Aw. And trying to call my mom. But I'm so thankful that he, is able to recognize the signs and get help.

[00:22:51] Sakhara: What would you say oh. Does a this. Okay. The KLS episodes and [00:23:00] the narcolepsy episodes, do you ever find that they mesh together or is it like you have a KLS episode and you have a narcolepsy episode? What does that s look like? 

Narcolepsy Diagnosis & Living with Both Conditions

[00:23:14] Saphronia: First of all, I didn't even know I had narcolepsy until two or three years ago. I went to, started going to a, I think it's a pulmonologist, and she was the one that recommended that I have a sleep study done. And so 

[00:23:28] Kerly Joy: why did, what led you to her? 

[00:23:31] Saphronia: Because doctor's saying there's nothing else they can do for me and wanna transfer me to someone else. 

[00:23:36] Kerly Joy: Your care, your cares doctor, 

[00:23:39] Saphronia: they had no other treatments that they wanted to try or could do or figure out how to help.

[00:23:43] Saphronia: So they would recommend me, go see someone else. That happened quite often. 

[00:23:48] Saphronia: So the cares was getting worse? 

[00:23:51] Saphronia: It wasn't necessarily getting worse, it's just that they couldn't control it. 

[00:23:56] Kerly Joy: Okay. 

[00:23:57] Saphronia: Like they couldn't manage the episodes. [00:24:00] So she ended up requesting a sleep study. And I go in with the mindset that everything's fine.

[00:24:08] Saphronia: I'm doing what I'm supposed to be doing during a sleep study and the guy's you're falling asleep like within five minutes every time you close your eyes. I'm like, you've gotta be kidding. There's no way. But yeah, so that's how I ended up getting diagnosed with narcolepsy was through that sleep study.

[00:24:24] Saphronia: But I really can't tell the difference between the narcolepsy, I guess because I had KLS first. So I don't know, if I'm just dealing with narcolepsy on a daily basis because like I do have to take medication every day to keep me awake. So if I don't take the medication to keep me awake, then I will go to sleep.

[00:24:43] Saphronia: So I think that's mo more of the narcolepsy. Yeah. 

[00:24:46] Kerly Joy: So that's 

[00:24:48] Saphronia: but I don't think they actually like mesh between each other, if that makes sense. 

[00:24:54] Sakhara: Okay. And what medication are you taking for, are you taking medication for the KLS and the [00:25:00] narcolepsy or just the narcolepsy? 

[00:25:02] Saphronia: I have been through a number of,

[00:25:05] Kerly Joy: when you were diagnosed, ?Did they medicate you from the KLS 

[00:25:10] Saphronia: They started me with lithium. I remember lithium being the first thing that they prescribed me, and I think that was one of the things that they had researched. 

[00:25:19] Kerly Joy: And how did you do with that? 

[00:25:21] Saphronia: It wasn't very effective because they couldn't figure out the dosage and how to use it.

[00:25:27] Saphronia: Was I supposed to be on it daily or was I supposed to use it when I felt like I was going into an episode? So they tried several different things, but it didn't really have an effect. 

[00:25:37] Kerly Joy: And then after that, they tried something else on the, 

[00:25:40] Saphronia: yes. I've tried so many different things. I can't even remember, all the things that I've tried. I've tried several antidepressants. I've tried the lithium, like I said, I've been on sleeping medications. I've been on wakefulness medications like Wix and some other ones that are, promote wakefulness. But [00:26:00] those didn't seem to work for me. So now I am on fluoxetine, which helps stabilize my mood.

[00:26:09] Saphronia: And my stress level keeps my stress level at a, at a decent level and then I also have anxiety on top of that, so I have to take medication for anxiety. And then I have Adderall for the wakefulness to keep me awake every day.

[00:26:23] Saphronia: So I think that's, and I was I just started back taking sleep medication to go to sleep because if I don't take the medication to go to sleep, then I'll stay up all night and my brain's just constantly going. So it's like I have to take medicine to go to sleep and take medicine to wake up and it's just constant back and forth.

[00:26:40] Kerly Joy: Yeah. That's the narcolepsy though. Yeah. That part is the narcolepsy. It's very interesting. I am trying to figure out in my head

[00:26:50] Kerly Joy: when you had all the KLS episodes and you were in and out of the episodes, when they were saying they couldn't do anything else. But something was changing in your [00:27:00] body in order for the narcolepsy to be triggered. The people who I've interviewed with KLS the parents say the both people who are interviewed the children were in episodes, so I couldn't talk to them.

[00:27:11] Kerly Joy: But their parents would say that the child was in episode, they're one person, and then when they wake up and they're not in episode, they're completely different person. Yeah. And they're very happy and lovable and everything. So I'm trying to figure out how that would work, like for an adult.

[00:27:26] Kerly Joy: And so then when you started having your narcolepsy symptoms, it meant that you went from being normal in the normal when you weren't in episode to in your tennis episode. And then you come out of that and then you'd be normal again, and then all of a sudden you started feeling sleepy when you weren't in episodes.

[00:27:48] Kerly Joy: So that was a narcolepsy kicking in where you should have been feeling normal and alert and everything. Then you started feeling sleepy in the daytime when you went in episode. 

[00:27:58] Saphronia: Yes. [00:28:00] 

[00:28:00] Sakhara: Wow. 

[00:28:01] Saphronia: Just to comment on what you said about the being one person while I'm in an episode and being another person while I'm out of an episode, and that's like a little household joke that we have here because my whole family says, they call me Lola when I'm in an episode because the polar opposite of how I am on a regular day.

[00:28:20] Saphronia: I'm angry. I'm mean, I'm wanna keep to myself. I'm just a completely different person, personality and everything. I don't wanna talk to anybody. I'm really snappy. And on a regular day, I'm happy go lucky, doing all the things, trying to get everything done, just busy body moving all around and what have you.

[00:28:37] Saphronia: So it's two, two totally different people. And my dad would always say, it's Lola back.

[00:28:42] Saphronia: Here we go. 

[00:28:44] Kerly Joy: Wow. So it's true. So what did the doctor say about this ?

[00:28:48] Saphronia: No one said anything about it. Honestly, most of the doctors that I saw didn't really have anything to say about KLS, let alone knew about it.

[00:28:58] Saphronia: The majority of the doctors that I went [00:29:00] to did not have any idea what KLS was. 

[00:29:04] Sakhara: Wow. Even the 

[00:29:05] Kerly Joy: neurologists. 

[00:29:06] Saphronia: Even the neurologist, 

[00:29:08] Kerly Joy: oh my god. 

[00:29:10] Sakhara: What? 

[00:29:11] Saphronia: And neurologist. The last doctor that I worked with, I think she was a pulmonologist, the one that did the sleep study for the narcolepsy. She flat out told me, she was like, I just want you to know, I've never heard of KLS ever. You're my first patient with this disorder, but I'm gonna try to do everything that I can to help you. And she was one of, by far, one of the most helpful doctors trying to get reach out and research and do everything that she could to figure out what would be helpful for me. Whereas some of the doctors were just like, I don't know, and move on.

[00:29:45] Saphronia: You need to go see somebody else. 

[00:29:47] Sakhara: Wow. That is crazy. That's unbelievable. But I, this means you've got 

[00:29:53] Kerly Joy: so much work to do. 

[00:29:54] Sakhara: This is 

[00:29:54] Kerly Joy: Yeah. Sad even, 

[00:29:55] Sakhara: yeah. It's really sad. And it's even sadder that, [00:30:00] I think in one, when we went to one of the conferences. I was a doctor and that said that medical students only get two hours to study on sleep. Even the medical students, the doctors, they don't really know, that much about sleep disorder. So it's really sad. 

[00:30:19] Kerly Joy: Yeah. Unless they decide to go and specialize in it. But my problem with that is how do you specialize in something if you don't know about it?

[00:30:27] Saphronia: Yeah.

[00:30:28] Kerly Joy: With medicine, , you go to general to learn all the different topics about the body and then somehow you fall in love or there's something about one particular organ that excites you and then that's what makes you want to specialize in that particular organ.

[00:30:42] Kerly Joy: If they don't tell you everything about that organ, how will you know that you actually wanna specialize in this particular thing?

[00:30:49] Sakhara: Yeah, I would think that we would have more specialists considering the fact that the sleep disorders that we have are rare and that there's so many [00:31:00] sleep, so many different types of sleep disorders out there, and a lot of them are rare, and it's almost like for every sleep disorder you need a specific specialist for that disorder. We got a lot of work to do.

[00:31:18] Kerly Joy: . when you got told you had narcolepsy, how did you feel then? 

[00:31:23] Saphronia: I was really shocked. I would always joke around with my dad. I'm just like, dude, you have narcolepsy. He'd fall asleep just like that all the time throughout the day. I'm like, what is wrong with you?

[00:31:34] Saphronia: Why are you sleeping? And then here I go, you have narcolepsy. And I'm like, get from that. And KLS at the same time that's just so crazy to me. But I was definitely shocked. But I, like I said, I can see, or like you said, I can see the narcolepsy plana factor in the daytime sleepiness and constantly being sleepy. If I don't take my medicine in the morning, then it's [00:32:00] just a downhill battle. 

[00:32:02] Sakhara: So speaking of the narcolepsy, so how does the cataplexy, do you have certain cataplexy triggers or how does that play a role.

[00:32:12] Saphronia: So the interesting part about that is I actually found out about the cataplexy part maybe about a couple of weeks ago from my psychiatrist.

[00:32:24] Saphronia: And 'cause I told her that I wanted to, know all of my diagnosis and stuff, and she told me that I, she had listed me with narcolepsy, with cataplexy to where, when I just, when I fall asleep, I'm just out, just done. And that's pretty much the same way with KLS when I fall asleep, I'm just out.

[00:32:43] Kerly Joy: So you didn't yourself experience any loss of muscle control? 

[00:32:47] Saphronia: No. 

[00:32:49] Kerly Joy: Maybe you don't remember. 

[00:32:51] Sakhara: Wow. 

[00:32:52] Saphronia: We don't, you're probably right. 

[00:32:54] Kerly Joy: You have cataplexy girlfriend, you know you have cataplexy, Yes. Yes. [00:33:00] Let's explore this. Are you someone that's very clumsy?

[00:33:07] Saphronia: Not typically, no. 

[00:33:08] Kerly Joy: Okay, good. So when you started feeling tired in the day, did you ever have times when you would do stuff like drop your keys by a mistake, or you're washing the dishes and the dishes slips or you're watching a movie and then you fall out like you're falling into asleep and then you come back and you've missed part of the movie.

[00:33:34] Saphronia: That? Yes. 

[00:33:36] Kerly Joy: Okay. That's cataplexy. When you've been angry, you can't get the words out and you feel twitches in your face and your neck or your legs or your arms. 

[00:33:47] Saphronia: Not that I noticed. No. 

[00:33:49] Kerly Joy: No. Yeah. Cataplexy must be very mild then because 

[00:33:54] Saphronia: Yeah. 

[00:33:55] Kerly Joy: Yeah. You should be feeling it like in your face twitching in [00:34:00] your body, in your fingers, in your hands.

[00:34:02] Kerly Joy: That's what I actually, about the being clumsy. A lot of people who have very mild cataplexy, they'll say that they thought they were clots all this time. But their whole life, they thought they were clots. It wasn't, they were having cataplexy the whole time. 

[00:34:15] Saphronia: That's interesting. 

[00:34:16] Kerly Joy: Yeah.

[00:34:16] Kerly Joy: So that, just like things, one minute you are holding your phone the next minute your phone, you have phones on the floor, but you didn't drop it on purpose. How did it get there? That's cataplexy in its mildest form. And then it's most aggressive form would be one minute you are up on the standing, up next you are on the floor.

[00:34:33] Saphronia: And that's the thing about it, when I, when they told me that I was like falling asleep, like instantly I couldn't believe that. I'm like, I'm, I was not asleep. Like I really feel like I was wide awake. And they're like, like in rapid eye movement room sleep. 

[00:34:48] Kerly Joy: So what about paralysis and hallucinations?

[00:34:53] Saphronia: Hallucinations, definitely with the KLS episodes, like 100%. Oh, [00:35:00] okay. Like I will be in the room by myself the majority of the time and I hear things. I see things. It's so scary. 

[00:35:09] Kerly Joy: So it's very vivid. So then you started having those same things in the daytime with the narcolepsy? 

[00:35:18] Saphronia: Not so much.

[00:35:19] Saphronia: That's just much with the KLS. 

[00:35:22] Kerly Joy: Oh, that's nice. You got spared that one or you'd have it double. 

[00:35:28] Sakhara: Yeah. 

[00:35:30] Kerly Joy: So lucky you got spare that one. And what about paralysis? No, you're not having parais. That's good. What? You're nice. Oh 

[00:35:43] Sakhara: no, like 

[00:35:45] Kerly Joy: you a nice mild narcolepsy. I pray you don't get, because some people start off, I always tell people, be careful with narcolepsy.

[00:35:54] Kerly Joy: Now it has a way of surprising you because some people start with narcolepsy and it's very like chill. [00:36:00] And they think, obviously for them it's not chill, but they think, it's bad, but it's actually quite chill. And then as the years progresses, they start getting the other symptoms.

[00:36:09] Kerly Joy: Like first they only start up with one symptom, and then as the years progressed, they get another symptom of it, another symptom of another. And before you know it, they've got all, and then some people like myself, started with everything. So it just depends. 

[00:36:21] Saphronia: Yeah. 

[00:36:22] Kerly Joy: Yeah. Because you have KLS for you, I'm glad that the narcolepsy is not full blown with all the symptoms.

[00:36:28] Saphronia: Oh yes. Me too. 

[00:36:30] Kerly Joy: Yeah. 'cause that will be a lot. 

[00:36:32] Saphronia: Yeah. 

[00:36:33] Kerly Joy: Yeah. Because when, once you said that you were having the vivid dreams and everything in KLS, I was like, oh my God, she's having them in day and night. That's awful. 

[00:36:42] Saphronia: No, it was to the point where I was having the hallucinations, like I really thought I was going crazy.

[00:36:47] Saphronia: Like I'm losing my mind. This is not okay. I'm seeing stuff. I'm hearing stuff and nobody's ear. Yeah. Just it's crazy. And it's just so [00:37:00] hard to explain to somebody that doesn't have it. Like, how do you explain what you're going through when I physically can't and don't understand what I'm going through while I'm going through it because I'm not able to comprehend or process, that information.

[00:37:16] Saphronia: And it's just the way that people look at you differently after, they've seen you in an episode versus when they, when how you normally are. Like for instance, my the school counselor, she came up to me one day and she was just, I guess she was trying to get a better understanding, but it used a poor choice of words.

[00:37:37] Saphronia: She was like, so when you're in an episode, it's like you're on drugs. And I'm like. No,

[00:37:45] Saphronia: no. Like I, I didn't say anything at that point, but after I thought about it longer and longer, I'm like, that really hurt. Like i'm not making this stuff up. And it's just, I'm, I don't even know what to say because I had so many [00:38:00] things that were said about me and done to me as far as, the KLS episodes and people not believing me and what have you, but just trying to keep, move, moving forward with, what people saying, what they're gonna say, and me just moving forward.

[00:38:15] Kerly Joy: What are you doing for work now? How are you managing with that? Or maybe to get on disability and things like that to help you. 

[00:38:25] Saphronia: When I before I resigned, I had actually been out of school so long that I was actually paying the district to work for them. So I was having to pay for my insurance because I was no longer getting a check through the district, and I needed the insurance to continue to go to the doctors.

[00:38:47] Saphronia: So that was part of the reason why I resigned, is because I was having to pay money to keep my job, which is Oh wow.

[00:38:55] Kerly Joy: It's like the opposite of what you'd think would happen. 

[00:38:57] Saphronia: Yes. I had ran [00:39:00] out of my FMLA, I believe at that point in time, and then they put me on temporary disability leave, I believe, which is non paid or what have you.

[00:39:10] Saphronia: And then I resigned in April and I did nothing for a while because I was just so down on myself about not being able to do anything and having to rely on people. And I lost trust. Just completely. But now I've been working ho from home as a virtual tutor since October of 2022 and it's been working out pretty good so far.

[00:39:36] Saphronia: I like being at home in my own middle space and not having to worry about other people and depend on people and all the things that come with outside work. 

[00:39:47] Kerly Joy: And it means you can schedule your time and your naps in between. You have control over the timetable almost. 

[00:39:53] Saphronia: Yes. 

[00:39:55] Kerly Joy: And you found that's been really manageable and working 

[00:39:58] Saphronia: Yes.[00:40:00] 

[00:40:00] Kerly Joy: That's good. I'm glad you were able to go back into teaching. Both my parents are teachers retired teachers, so I know that, I always say there are teachers and there's teachers. There's people who are gifted to do it, and it was their calling. And there's some people who should never have been in teaching the first way.

[00:40:15] Kerly Joy: Exactly. And if you were gifted it, it's really hard when it gets taken away from you because it's your whole, it's part of almost your identity. 

[00:40:24] Saphronia: Oh yeah, it was, it's still hard to this day. Like I said, I've never wanted to do anything else. And to not be able to do that and be in the classroom with those kids, it hurts every day.

[00:40:35] Saphronia: Still to this day, like that was part of me. And to be such a good teacher, a great teacher that I was, and to be treated so terribly by the people that were supposed to be backing me was really damaging. Really damaging to the point where I just can't ever see myself going back to the classroom ever.

[00:40:58] Saphronia: Even if I were [00:41:00] to somehow, get over KLS and not have, I can't see myself going back to the classroom because that's how damaged I am from everything that I experienced with my job. 

[00:41:08] Sakhara: Wow. . During that time, was there any support groups or mental health like how did you cope with the, being let go from your job and just the everyday struggles of. The KLS and narcolepsy on top of that. Like how, what were some ways that you coped if you did cope?

[00:41:32] Saphronia: I honestly don't feel like I did. I just felt like I just had to keep pushing just to make it through the day. I think I had started seeing a psychiatrist probably about five years ago, four or five years ago. And the psychiatrist has helped a lot with managing my medications, my stress, and my anxiety.

[00:41:58] Saphronia: So she's helped [00:42:00] tremendously. But as far as like having a support system outside of my family didn't have one. And I lost so many friends. I lost coworkers. It was just so hard. He like, I'm this great person one day and then all of a sudden I get sick and have these episodes and it's you guys don't even know me anymore.

[00:42:23] Kerly Joy: Aw. I'm sorry. You wanna do that? 

[00:42:25] Sakhara: Yeah. 

[00:42:26] Kerly Joy: I dunno if you're Christian. Are you Christian? I know this is easy for me to say now, but I've been through it so I know. It's so horrible when friends abandon you when you're sick. But I always see it like God is cleaning up and toxic people out of your life that we're never gonna be able to support you.

[00:42:47] Kerly Joy: And he's gonna replace them with people who are, and. I can testify that he has done that. Maybe not straight away, but later on, 3, 4, 5 years down the line, he's put other people back in my life. People who I would [00:43:00] never, would've necessarily come in contact with myself or made friends with naturally myself.

[00:43:04] Kerly Joy: But God's put them there and they've been amazing. And,

[00:43:08] Kerly Joy: but it is very rough when you're going through that, especially when you have been supportive to them through their stuff. And then now it's your turn and then just that, poof. They can't cope. They're gone 

[00:43:20] Saphronia: 100%.

[00:43:22] Kerly Joy: So do you use any of the careless support groups online? Have you met anyone else who has careless? 

[00:43:30] Saphronia: I have not. I take it back, I I think he reached out to me, a guy in a Facebook group that I'm in a KLS Facebook group reached out to me at some point some years back ago. But that was the only person I've ever actually been in contact with that has KLS.

[00:43:49] Saphronia: But we didn't, maintain any kind of relationship or anything like that. It was just interesting to have somebody that was in the same city as me that, has KLS [00:44:00] 

[00:44:00] Kerly Joy: Well, Sakhara can testify to this. It helps having a friend that has the same illness as you. It's like having a twin.

[00:44:07] Kerly Joy: They read your mind, they, everything you're feeling, you're thinking you whatever. They ignore it. They're going through it exactly the same as you. And it really helps. So I would encourage you to look into that and pursuing that, it makes the world of difference. 

[00:44:25] Sakhara: Yeah it really does. Because when I first got diagnosed with narcolepsy, with cataplexy, I was misdiagnosed as well and my first initial thought was like black people, we don't get sleep disorders. That's the white people thing. That's what I was thinking in my head, and it wasn't, it definitely was very lonely, definitely like a very lonely road, figuring out like, finding out I had narcolepsy and then, my thought was like, okay, here's another thing I gotta deal with.

[00:44:58] Sakhara: I went through, [00:45:00] I know similar thing with you, with like school and stuff. I had an internship. I was let go because they thought I was on drugs and I got dismissed from school because of my narcolepsy. I had anxiety at the time, I had some family, passing and stuff, so I just couldn't handle school and stuff.

[00:45:25] Sakhara: And it was, normally when I would like, push myself just push myself through it, emotionally, I just, I couldn't do it. I got this business from school, but after, afterwards I started reaching out to people and, I. Used to, I was attending like project, sleep support groups and wake up support groups.

[00:45:50] Sakhara: And then, a year ago I met Kerly of course. And we've just become so [00:46:00] connected, so close. So it definitely is an amazing thing when you have someone that has a similar thing than you. And because you don't have to explain what you're going through.

[00:46:14] Sakhara: They know what you're going through because they're going through the same thing. . And we are here for you. So yes, we're here for you. We have, yes, 

[00:46:24] Kerly Joy: we're not represented very much in the community as black women or black men. And so we have to sit together and support each other. So don't be a stranger darling.

[00:46:35] Kerly Joy: Whenever you need support, reach out. 

[00:46:38] Saphronia: Thank you. 

Closing & Red Button Question

[00:46:41] Kerly Joy: So is there any last words you want to leave with the audience, something you want them to take away about KLS or narcolepsy?

[00:46:50] Saphronia: I don't know. It's difficult. It's just difficult in the beginning, trying to get, trying to process everything and understand [00:47:00] everything but. I don't wanna necessarily say it gets better or easier, but you come to a point where you understand it and you're able to, tell when you're going into an episode and be a little bit more prepared as versus where you were in the beginning where you had no idea.

[00:47:18] Saphronia: And the episodes do get shorter. There is that little piece to look forward to. And hopefully, at this point in time, there is no cure, but it's supposed to go away after 10 years, but I've had it over 10 years now. So I'm not sure, what path lies ahead of me, but I'm here for it and, I'm working through it best I can.

[00:47:40] Kerly Joy: Yeah, I just, before we came on, I heard the doctor talking and he said that, and I was like, I wish I was there to say to him, oh, please do not say that because I've talked to like couple of people recently and their has not gone away after 10 years, so I don't like that to be [00:48:00] so placed out there. It's like a almost a false hope for someone and then they get to 10 year mark and then it's still continuing.

[00:48:06] Kerly Joy: You're thinking, hang on a second. This was supposed to be a temporary thing. 

[00:48:09] Saphronia: Yeah. 

[00:48:10] Kerly Joy: Yeah. So I think they, there's still a lot of research that they need and money that they need to put into it's, and learning more about it and trying to figure out more so that know people have answers because I can, just, like the last person that I interviewed, the son, he started having it as a teenager.

[00:48:31] Kerly Joy: He's 20 now, so it's. Had 10 years and he still has it. So if this is, if it's a 10 year illness, then should be having a party soon to say, hello, Kayla, this is gone. 

[00:48:44] Saphronia: I wish it were that easy. 

[00:48:46] Kerly Joy: Exactly. Ari you wanna ask her the red button question? 

[00:48:51] Sakhara: Yeah. So usually at the end of the podcast interview we ask you, the red button [00:49:00] question, which is, if there was a red button and you could push it to no longer have KLS and narcolepsy, would you push it?

[00:49:12] Sakhara: Why or why not?

[00:49:14] Saphronia: I would definitely say yes. I would push it because I've lost so much I've missed out on so much time. So many important memories. It's so many things that I'll never be able to get back because of being out and being asleep in episodes. I would definitely take those memories over having this, 

[00:49:40] Kerly Joy: Aw, we're sending you hugs, so we wish we could hug you.

[00:49:45] Sakhara: Yes. Is there a is there a quote, a song, or something that you use that helps you through the tough times?

[00:49:57] Saphronia: Not really. Just staying in [00:50:00] constant prayer and just knowing that he's gonna see me through this and everything's gonna be okay.

[00:50:05] Kerly Joy: Thank you darling for coming on Narcolepsy Navigators. Thank you for being vulnerable and sharing your story. We really appreciate it and your story is going to help someone else out there, and that's why we do this. So we usually end with saying, happy, napping, everyone. 

[00:50:25] Kerly: Happy napping everyone