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- [00:09]
Host 1
This week's episode, I should stop being surprised. Of all the things I learned because I never think, oh, there can't be something totally out of left field. I've never heard again. Guess what it was.
- [00:21]
Host 2
Well, you know, we were having a laugh because this is part of our series of diseases that need a rebrand.
- [00:29]
Host 1
Oh, yeah.
- [00:30]
Host 2
And if the doctors can't say it or remember it, we should probably call it something else. But that's something that we are asking your help with. At the end of the episodes, we have a very special ask for our listeners and also an ask again. This is another one of our listeners who emailed us and shared the story with us. So please, if you have your story that you want to share, email it to Strike Stories Themedical Detectives podcast dot com. And if you have problems remembering what that email address is, it is in the notes at the. Or the. What is it called?
- [01:07]
Tracy
The.
- [01:08]
Host 2
The show notes.
- [01:09]
Host 1
Yeah, the notes.
- [01:09]
Host 2
The show notes. The show notes on Spotify and.
- [01:12]
Host 1
Yeah, and Apple, the place of which text lives below the episode. I would also say, too, a lot of people are hesitant, like, is my story interesting enough? And I think every person who's questioned that that's been on the show. I've been like, how could you ever think it wasn't? So don't be afraid. Don't worry if you don't know if it's the right fit. Probably more interesting than you think. So with that, just a little reminder if you love our show, to go ahead and drop us some stars and some lovely words and tell your friends, because that's how we get to keep doing this. With that, I'm gonna stop yakking and we're just gonna get into the episode.
- [01:49]
Host 2
All right, let' Hi, Tracy. Welcome to the Medical Detectives. Thank you so much for joining us.
- [01:59]
Host 1
Hello. Hello.
- [02:00]
Tracy
No problem. Thank you for having me. Thank you.
- [02:03]
Host 2
You are our second guest from Australia.
- [02:07]
Tracy
I've had a look. Yeah, I had a look to see if I was maybe the first, but I wasn't. But that's fine. I'm actually from the uk. I grew up in Wales, but I moved to Australia when I was 21.
- [02:19]
Host 2
Well, Tracy, can you talk to us a little bit about what it was like growing up in Wales?
- [02:25]
Tracy
Yes. Cold. It was cold. It was great, though. I had a great time. I had sisters and brothers and no complaints about childhood whatsoever. You know, it's just the usual childhood. No real illnesses to speak of.
- [02:39]
Host 1
So when did things change?
- [02:41]
Tracy
Okay, so I moved to Australia when I was 21 with my now husband, he's Australian. He came and snatched me from Wales. And so I've lived in Australia since I was about 21. So I'd say at least about. From about when I was 30, I always felt under the weather, something. I was always tired. Chronically, chronically tired. And not just, oh, I've had a late night tired, like, bone weary tired. Like, why am I so tired? So I would constantly go to. We call them gps here, your main doctor, just a general practitioner. So I'd go there, I would have many, many blood tests. I'm always like, why am I tired? I eat pretty well most of the time. I exercise quite a lot, I drink lots of water, I have lots of sleep. I'm like, there is absolutely no reason for me to be tired. B12. Everything, everything, everything came back as normal. So that kind of became my normal. I'm just a tired person. There's nothing wrong. And I'd always complain to my poor husband, I'm tired. And he's like, why? I said, well, I. I don't know, go to bed early, that sort of thing. And about during this time, I would always get little ulcers, just little white ulcers. Like if you bite the tip of your tongue, something like that, you get a little ulcer.
- [04:02]
Host 2
Oh, it's like a canker sore.
- [04:04]
Tracy
Exactly. Yeah. So very prone to those. Then I just started getting sore throats all of the time. So you know when you get a sore throat and you think, oh, I'm going to get tonsillitis, or I'm going to get a cold, something like that. But I would never get sick, it would never develop. It was always a sore throat. So I'm like, what is going on? So was there anything that you would.
- [04:27]
Host 2
Do that make the sore throat better?
- [04:29]
Tracy
Not really, no. No. And it wasn't terrible. Like, I've had tonsillitis as a child. That's horrible. But just sore throat. It became to a point where I had a sore throat more often than I didn't have a sore throat. Again, nothing wrong. There's nothing wrong with you. Okay. It just became.
- [04:46]
Host 2
Were you ever, like, put on antibiotics or what?
- [04:50]
Tracy
No. So it didn't develop into anything, as in a cold or the flu or anything like that, Just the sore throat. Okay. That's another thing.
- [05:02]
Host 1
So I'm just curious here. You were asked to live with. Because just having a sore throat constantly doesn't to me seem like nothing. I know that you probably were told that a lot, but. Yeah, I don't think that's Nothing. Right.
- [05:18]
Tracy
You get used to it is the thing.
- [05:21]
Host 1
I hear this from people when they come on. They get used to it. But it still makes me.
- [05:25]
Tracy
Yes, it does. Yeah, it does. And I went quite often, so I'd go and see a doctor, I'd have some more blood tests, just the standard blood tests, and they'd all come back in normal. And I'd be like, okay, let's try maybe some more exercise or let's try some yoga, you know. But nothing would ever make me feel great, so I would just continue. During all of that time, I had children and I studied and I worked, so I just kept going. It's like, okay, how did that feel?
- [05:58]
Host 1
How did that feel to kind of, you know, live with this chronic sore throat?
- [06:02]
Tracy
Yeah. Without resolution. Yeah. Most of the time I would just be like, okay, let's get on with it. Let's just get on with it. Occasionally, if I thought about it too much, I'd get annoyed and. Oh. But I'm the type of person that will quickly snap out of that. So, you know, if I get up and I'm like, I'm tired, I'm tired. Oh, well, let's get on with it. Go for a walk. That'll make you feel a bit better and keep moving.
- [06:28]
Host 1
Why do you think that you just got on with it? Why do you think that you didn't allow yourself to be frustrated?
- [06:34]
Tracy
I don't know. That's my personality. And it's almost to a fault. Probably if I'm unwell or something like that, I won't tend to rest or I'm quite annoying, actually, come to think.
- [06:49]
Host 2
So you are living life with these inconveniences.
- [06:53]
Tracy
Yes. Yes. So they're not dramatic sores.
- [06:58]
Host 2
Tiredness.
- [06:59]
Tracy
Yeah. You just work around them, even to the point. I remember trying to use an electric toothbrush because it's supposed to be better for you. And they would just break out all over. And twice I did that. So I thought, I can't be the toothbrush. Twice it took me, did it again. It's the toothbrush. So any sort of. Not even trauma, anything, they would just pop up. So again, it became a thing of. Oh, well, it's.
- [07:24]
Host 2
Did your dentist have anything to say?
- [07:27]
Tracy
Not really, no. No. Because they're just ulcers. Just ulcers. And I do a lot of research and there are a lot of people who live with little canker sores. It's a thing. It could be from B12, it could be from this. And of course, I start taking B12 and lysine, and nothing changed. So it became a thing of, Yep, okay. It's just how I'm going to be. And then it all of a sudden changed in about 2020. So one day I sort of felt like something was stuck in the roof of my mouth. I'm like, what's that? So I go and look in the mirror and there's a big blood blister in the roof of my mouth, which is quite alarming. And I'm like, oh, yeah, like, it's dark red. It's about a centimeter dark red blood. And I'm thinking, oh, that's unusual. So I go to the doctor. Doesn't really give me anything, to be honest. You know, I saw it and I'm quite alarmed. I'm like, that is not a normal thing to have in your mouth. So I go to the doctor. No real answers. No blood tests other than the standard ones. No real. It wasn't like, oh, that's unusual. Let's go and investigate it further. Nothing like that. So I'm thinking, okay, well, stop being a baby. A blood blister, I said, I thought that. He didn't say that. I'll make that clear. So I'm thinking, well, that's really not normal. Now, the blood blister were becoming more and more severe. So started off probably, I don't know, maybe once, once a month or so, they started to escalate and were getting worse. So it was some points I was getting them maybe 33 times a week. And at this point I still had no idea what it was. So I could feel them pop up. And generally they seem to happen in the evening. They had quite a routine, which was really strange. So I would get them generally in the evening. I could actually feel them pop up. So they're not like blisters that you get on your foot that go over time. They would be in a second and sometimes I could feel them getting close to the back of my throat, which could be quite alarming because I don't know if this is an anaphylactic thing that is starting to be triggered. And I'm thinking, you know, oh, my God, is my throat going to swell up next time? And with the list, did they ever.
- [09:49]
Host 2
Did they ever pop?
- [09:52]
Tracy
They pop where they would pop straight away and blood would come out.
- [09:55]
Host 2
So you just have a mouthful of. Of blood.
- [09:59]
Tracy
So what would happen is within a second. And I got used to being able to feel there's a blister there now. So in a second it would go from nothing to sometimes we're talking about an inch long blister in the mouth. Straight away, look in my mouth. There we go. It's another blister full of dark red blood. They're really red blood. They would pop within probably about a minute. And that's where the problem starts. Because the skin all around the blister will. It's like it disintegrates. So it's not just that one blister, it's the whole area of the skin. And for about five days after it would be so painful. So, so, so painful. And depending on how big the blisters are, some of the worst ones I just couldn't eat. It would hurt too. Just the action of breathing the air going over the skin was painful. It was awful. So painful. Absolutely painful. But I would. Yeah, I just keep going. I don't think I ever. I only called in sick one time for work. Well, I must have had them down my neck at that time inside. And you can never see them, of course is the thing to look at me, you would have no idea that I had anything. And I remember one day I couldn't just to move my neck was painful. And that day, I can't go to work today. I've had enough. That was one day I was like, I've had enough, I'm not going to work. But I only had one day off and then I just went back to work because what is the other option? Sitting at home with your blisters thinking about it. It's not going to do any good at all, at all. And the doctors would say try a salt mouthwash, right?
- [11:49]
Host 1
Oh, salt in your wounds.
- [11:50]
Tracy
That's that sort of thing.
- [11:53]
Host 1
That's exactly what you want.
- [11:55]
Tracy
And any treatment wouldn't work yet. The only thing that would help funnily enough was warm liquids. You'd think cold would numb it, but warm would help. And in nighttime when they dried out seemed to be the worst. I don't know if you don't have as much saliva or something at nighttime. So they were. So there was a suggestion of keep a food diary if there's something that's triggering it. Great idea, Great. Okay, let's do that. So I keep a food diary and I notice another symptom too. My skin has always been very reactive to certain things. Not that I can pinpoint most of them. Like, you know, just today I took off some tape for a sore knee and my skin's all gone weird. But things like if I touch a pumpkin or a vine plant the skin on my fingers will peel off, which is not really normal. Like again, that became something that I lived with.
- [12:58]
Host 1
Why? You just told me your skin peeled away if you touched a pumpkin.
- [13:04]
Tracy
I know it because I saw doctors for that too. And there was no real. Oh, that's weird. No, not really.
- [13:12]
Host 2
Would it just be the part that touched the plant, like your fingertips, if you touched a pumpkin that would peel or what?
- [13:20]
Tracy
Weirdly enough, no matter what part of the pumpkin I touch, it would be the same area that would peel. So even if I go tried to garden and it would touch my arm a little bit, I would get a kind of a little rash, but not peeling. And it was always the same my finger. Would it not. It was sort of. The skin would go slightly hard and then over two weeks it would peel off. And that was quite painful, especially in the bits that fold over again. I just stopped touching plants. So I kept a food diary and what I noticed in the food diary is that if I ate raw fruit, I would get blisters. Specifically blueberries, strawberries, which are delicious, especially here in the summer. Not bananas. So certain fruits, strawberries, blueberries. That's sort of thing that now became an issue, eating those. And the doctor suggested that I had something called raw allergy syndrome. Never heard of it. So apparently there is a syndrome you can have where your body gets confused with some sort of pollen from trees and reacts to raw fruit or vegetables. Sounds made up. I have a friend who's got no interest in food and she certainly doesn't like fruit and vegetables. So she's like, I kind of wish I had that. But you do not. Stop it.
- [14:56]
Host 2
Who was making this diagnosis? Was it an allergist? Were you seeing an ENT surgeon?
- [15:02]
Tracy
No, I hadn't seen any specialists at this point.
- [15:04]
Host 1
Oh, of course you haven't.
- [15:06]
Tracy
Why would I. That's.
- [15:08]
Host 1
Why would you. It was giant blisters exploding in the.
- [15:10]
Tracy
Back of your mouth, jaws, skin peeling, blood blisters, pain, raw fruit, weirdness going on. Why would I seem normalist? Of course. So these kept going and going and going and when I cut out the raw fruit, it did seem to get a bit better. I was still getting the blisters, but less so. I was hopeful that this was the answer. So I had saw the GP a few times. Obviously a gp, they're really good at what they do. But as you said, you need to see a specialist. So I made an appointment with an allergist myself in Sydney. You didn't need a referral. There was like an allergy clinic, and with all the issues with my skin, I'm thinking I have to be allergic to something. If something's giving me blood blisters and it looks like it's gross fruit, I must be allergic to something. I have to be. So I go and see them, they do the prick tests and everything. It's all completely normal. Nothing. I do not react to anything. And bearing in mind just this morning I took off some medical tape sort of stuff on my knee and the whole of my knee is completely red and raised and awful. But the skin crack test, nothing. Not even grass. Nothing, Nothing. I'm not allergic to blueberries, I'm not allergic to strawberries, Nothing. It's all completely normal. And I had pinned my hopes on this. I'm like, I must be allergic to something. This is what's causing it. So when I went there and they said it's all normal, I was gobsmacked. I'm like, how can that be? It was really disappointing, really disappointing because it did feel like it fit. It's not ideal, it's not something you want to have to deal with, but it's not life threatening. There are worse things to have to cut out. You know, it's not anaphylactic. So I kind of pinned all my hopes on that for a while. Great, this is it. And then when I realized it wasn't, yeah, it was just, oh, here we go again, here we go again. And that, that feeling will be last for a little while until you make another appointment with another specialist and then you pin all your hopes on that and you're like, okay, this person is going to fix everything. This will be it. They'll get an answer. And then you come out of that doctor's room and, you know, if you don't get any answers at all, every time it's pretty devastating. It's like, oh, no. And that will last a little bit. It's like a roller coaster that will last a little bit. And then I will pick myself up again. I'm like, all right, come on, let's, let's go again. So it's up and down, up and down. So to get nothing back from an allergy point of view was I'm just, I don't understand it. I'm like, now what do I do? So I went back to the gp, I don't know how many times I've been at this point. And he referred me to an immunologist. Finally, Ray, someone who may be able to help. And I got an appointment with them. In Canberra, which is about a 3. I live in regional Australia, so my next closest city is Canberra, which is about a three hour drive. So six hours all up. So I got an appointment with them through the public system. So there's public and private in Australia. And they said, we'll give you an appointment. And I told them all about my symptoms on the referral. The appointment's available in a year.
- [18:43]
Host 1
How long have you been experiencing these for now, at this point, I reckon two years.
- [18:49]
Tracy
Oh, my God, about a year and a half. Okay, so I get an appointment and they said, we'll give you an appointment in a year.
- [18:57]
Host 1
How did that make you feel?
- [18:59]
Tracy
Not good. Not good. And see, and every time you get an appointment like that, you think, well, they know my symptoms because it's in my referral. Clearly it's nothing that bad. You kind of think, you assume they've.
- [19:17]
Host 1
Read anything about you.
- [19:18]
Host 2
That's right.
- [19:19]
Host 1
Scheduling your appointment.
- [19:21]
Tracy
And then I actually got a letter, a letter from them in the post, a real letter saying we're going to have to move your appointment to about 18 months. So it went from a year. I'm like, okay, I got the house. All right. So at first I was like, okay. And then I'm like, okay, let's just deal with it. And then they got another. And then when I got the letter, oh, we're moving it to 18 months. And then, I mean, I get it, it's a public system, all of that. So then I saw a general surgeon in my area to try and get a biopsy of one of the ulcers or blisters, which would ultimately show what they are. So I went to see her. She had no idea. I mean, she's a general surgeon. Why would she. I'm just hoping someone had seen it before. So she said she didn't think a biopsy was necessary. Okay, I listen, you know, that's. She's a surgeon. I'll listen to her go and see an immunologist. And at that point I hadn't. So I made a private appointment, which I have to pay for in Sydney with an immunologist. I go and see her, she does more allergy testing and no real answers. She thinks it might be something called angina bullosa, which is basically blood blisters. And of course, I've done all through this time, I've done my own research trying to find anything, and I can't really find anything. There's a couple of rare things that come up, but I don't really. I can't really find anyone who's having this issue. Angina bulosa kind of fits in, but not really.
- [21:01]
Host 2
It's more of just a description of what?
- [21:04]
Tracy
Pretty much, yeah. It's not why exactly. So again, she was lovely, but no real answers. She really didn't know why. And I left that one again, what am I going to do now? Where am I going to go now? Who can I see? There's nowhere else to go. So she had said, we'll do another blood test for these other things and let's see if anything comes up. It's kind of like an offhand kind of, oh, let's just do another blood test. I genuinely don't think she thought it was because it was so off the cuff. It was kind of at the end of the appointment and she's like, oh, we'll just do another blood test. It wasn't, let's get these done. Let's see if it's this. Let's form a plan. It was more, oh, let's just try that one maybe when you get around to it, that kind of thing. So my impression was I'm pretty sure it's not this, but just in case. Okay, okay. At this point, I'd done many, many blood tests. I'd seen so many doctors and asked so many times that I had kind of. I remember saying to my husband, I'm just. This is just something I'm going to have to live with. I can't. Who else do I go to? But at this point, I've kind of given up trying to find out. I'm just going to have to.
- [22:24]
Host 1
Stages of misdiagnosis. Aaron, come on in.
- [22:27]
Host 2
I know you're in the app. You're in the apathy stage.
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Tracy
Yeah, you just like, I spent so much money, I've traveled so many places, I'm not getting any answers. I'll just wear gloves to garden and not eat any nice food and just deal with it. So I left there and I remember thinking, well, it's done. So she had given me this blood test form, and normally I will get blood tests straight away, but I was so over it by that point. I just waited a little bit and then I thought, oh, well, I may as well go and just get a blood test. So I had this blood test come back and then that triggered off the whole diagnosis saga. So a blood test come back? Yes. It just doesn't end. You think it would just be immediately, you know, diagnosis, let's get treatment. But no, it continues. So there was one blood test and at this point, everything in my blood is normal. Everything. Crp, which is an indicator of inflammation somewhere in the body, doesn't tell you what, but it means you're unwell somewhere. Always normal. Everything is normal, apart from this one blood test. Yeah, ESR was normal. So even if you have the flu or something, something will show up. No, no, all normal, apart from this one blood test, which is a DS, DSG3 antibody test. So this is an antibody. It's desmogline 3. So desmogline 3 is an adhesion protein in your desmosomes which governs your cell adhesion. So it's the sticky substance in your cells, it's the glue that keeps your cells together. That came back as extremely high. So this one blood test, out of probably hundreds I've had at this point had come back as extremely high. So the immunologist in Sydney had organized these blood tests. They had also got sent somehow. I don't know how they got sent to Canberra immunologist, but they did that. This is the one that was the 18 month appointment.
- [24:50]
Host 1
Oh, so they still hadn't seen you yet?
- [24:52]
Tracy
No, they hadn't seen me. I just let that one go wild and see if anything comes up. Eventually in a few years they might call me. I'd be like, I forgot about you. Um, but that triggered a phone call the next day after the blood test.
- [25:05]
Host 1
And I'm thinking, mysteriously, they now have time.
- [25:09]
Tracy
Suddenly, suddenly that same from 18 months to the day after. So I'm like, okay, that is not great. So she said what I need to do to 100% confirm the disease is have a biopsy of an ulcer or.
- [25:27]
Host 2
Blister that is fresh, what you asked for originally.
- [25:32]
Host 1
Oh, yeah, that's right.
- [25:33]
Tracy
Could have had that a couple of years ago. And so I need a biopsy of a fresh ulcer. It can't be one that's a day old. It has to be like within a few hours. How exactly? Exactly so. And they, they're usually at the back of my throat, which is a problem if it was on my hand. Easy, easy peasy. Yeah, your throat's a bit of a problem. And so I rang a few places. I'm thinking, how am I going to do this? Because like I said, these blisters pop really fast. And I'm just not sure how I'm going to schedule this and come in in time so they can have a fresh blister. So I was working at a doctor's surgery at that point and I was helping manage the practice. So our GPS did biopsies all the time. Not really at the back of your throat, but I'm like, I can't move on until I get this biopsy. So I asked one of the GPs to do the biopsy, a punch biopsy, it's like a little cookie cutter. And I said, can you do that? And they. Rightly so. They were like, I'm not, you know, it's in your mouth. Seeds of the mouth. I said, look, I don't have any choice. I need to get this done. So I was camping at the time and I had a blood blister pop up. That big one, a nice big juicy one, perfect for a biopsy. So I raced there and I'm like, can you please biopsy this? Took a bit of persuade in. I said, I won't hold you accountable for anything.
- [27:08]
Host 1
So you basically got your boss to, yeah, or when the surgeon's there, right, to.
- [27:14]
Tracy
To do a. Like a cookie cutter. So I, you know, convince him to do this. And the nurse is there and he says, hold this bucket because I don't know where all the blood's going to go. It might go down the back of your throat. And I remember thinking about this now. Oh, well, here we go. So we did it and it was fine, actually, it was. It hurt after, but obviously anyone's. The mouse would hurt after that. So sent it off like, great. So it comes back and of course, these biopsies, it has to be put in this special fluid and do this special thing. And if you don't get that 100% right, it's not going to work. So it came back. It's consistent but not conclusive.
- [28:02]
Host 1
You got to punch your throat again.
- [28:04]
Tracy
Come on. I'm like, oh, gosh. Okay. So the immunologist in Canberra at this point said, we're going to have to get you under, do a gastroscopy and get some biopsies throughout your esophagus under sedation this time even. I'm not keen for. For that to be awake. We're going to do that. In the meantime, I really want you to start taking prednisone and an immune suppressor, because this disease is very serious and it can still be fatal. And when they told me that I might have something that could be fatal, I was shocked. I genuinely never thought, because they're blisters, you know, horrible, really painful. But in my mind, no one's ever really died of a blister. So until steroids were vented, prednisone, it was 95% fatal. Yeah. So without. And it, it this. And I remember saying, because steroids, I know the sides effects of steroids. And I started off, yeah, I mean they're rough. Oh, I think my first dose was either 80 or 60 a day. 60 milligrams, which is a huge amount of steroids. Yeah, it's very high. And I knew the side effects and I actually delayed it because I knew what the side effects were going to be. And plus an immune suppressant on top of that. So I delayed it for about a month because I'm like, I don't really want to do this. And I remember saying, do I have to? And she. Her words were, there still is a mortality risk. Okay. You know, that kind of persuades me.
- [29:40]
Host 1
I guess the trade off is, in.
- [29:43]
Tracy
That case, what do you do? What do you do if you don't have treatment, this disease will kill you. So I really want you to start taking.
- [29:50]
Host 1
Okay, this, I just want to take a pause. This woman just told you that if you don't take this medication, it will kill you. Right. How are you feeling in this moment?
- [30:01]
Tracy
When I first got the phone call from Canberra, because it was a phone call and she's reading all this, I wasn't prepared for it at all because at this point I'm still thinking it's nothing serious because I've seen so many doctors. If it was something serious, like, how can you have a disease that could, without treatment, kill you but have no other abnormal blood test? It's crazy. Like everything is fine apart from this antibody test. How can that possibly be? So in my head it's like, huh. I just, I was still catching up at that point. It was. There's a lot of information. Everything went from me chasing doctors and trying to get answers to them contacting in me. So it was nice.
- [30:49]
Host 1
When did it sink in that, that, that you really had no choice while it.
- [30:55]
Tracy
I, I didn't take. I got the script for those meds and I didn't take it for probably six weeks. I didn't even take them, which is a bit silly in hindsight.
- [31:05]
Host 1
Did you get them filled or did you just hold.
- [31:07]
Tracy
No, I just kept them. I just kept them. And with any immune suppressant, the side effects are quite drastic. And prednisone? Well, I mean if you get a, if you get some sort of infection, you might not be able to fight it off with that immunologist. I ended up having three different immune medications because they weren't working. One of them was wrecking my other organs. In about. Only about five weeks of taking it, all of my kidney levels were deranged, my livers was deranged. Everything was going the wrong way because of that. And of course, if you get sick when you're on it, that's not ideal. And prednisone, anyone who's ever had it, even in a small dose, that stuff is awful. You can't sleep, you're. You kind of just blow up. I remember my face sort of just blew up. Like, my eyes were kind of squinty because it just. It just inflamed. So even within a few weeks, literally, my face was different, which was weird. And it made me gain weight. And I remember thinking, really, weight gain is the least of your issues right now. But still, I'd worked really hard to be happy with where I was at with my fitness and my weight. So to have something else just take over without any control was really annoying. And I was cranky. And steroids, mate, it's like roid rage. Steroids make you cranky, and they can. They have just so many side effects. So I started taking was either 80 or 60 milligrams of prednisone, a high dose daily, and the immune suppressant. But I still have to have this gastroscopy and get the biopsies throughout my esophagus. I'm like, okay, great, I'll do that. So I had the gastroscopy, had the biopsies. Finally, this has to be the answer. And of course, all of this is time as well. So you don't get to go and have a gastroscopy the next day. You've got to wait. So it was in, I think, a couple of weeks. I had the surgeons at the hospital did the gastroscopy, and then I got the results back. So I go and see a gp and she very casually says, okay, so it's definitely this disease. Hooray. Finally. But there are a few variants of the disease I have. There is a rare variant of this disease. So there's a rare variant of the rare disease. The biopsy that I had showed cleftin in some of the skin cells. And I kind of. They call it something to do with tombstone. It has like a tombstone appearance in the cells. And I'm probably not explaining that very well, but this was consistent with the rare version of this disease. Now, the problem with this is if I have this type of this disease, I definitely have cancer as well. I know. So I'm laughing because I'm like, at this point, come on what?
- [34:20]
Host 1
What? You know, you are not the first person to laugh over cancer on this podcast.
- [34:26]
Tracy
You just are like, come on, just give me a break at this point. So the disease I have is triggered something. So you're born with it, but it gets triggered about middle age. But that's what it looks like is that this particular variant you definitely have cancer and that's triggered it and it'll be somewhere in there. So I've gone from having a potentially fatal disease at this point. I still really don't know much about it and nobody does to now also having possible cancer. So.
- [34:57]
Host 1
Don'T you wish it was just you were allergic to the pollen on the vegetables.
- [35:00]
Tracy
Now turns out that if only it was just if you had raw food allergy syndrome. So I went and had a head to toe PET scratch scan which is picks up any cancers and I had to wait two weeks for the results of that. So I know.
- [35:17]
Host 1
What was that like?
- [35:17]
Tracy
That's a long time. That's a long time. So in my head I'm, you know, you generally day to day, you kind of, you distracted a bit, but it just kept popping back in my head, especially at nighttime. And you try not to let yourself get carried away because there's all, you know, there's no not. I was going to say there's no point in worrying about something you can't control, but that's not what I mean. You know, it may not be so you, you flip and flop, you know, oh my God, two. But it may not be two. So two weeks is a long time. Got the results back. No cancer, thank God.
- [35:59]
Host 1
But I thought you had to have cancer.
- [36:02]
Tracy
Turns out I didn't have that particular variant of the disease. I just have the rare one. Not the rare rare one. So what had happened when they looked into it further because the biopsy showed clept in and it had a tombstone appearance and blah, blah, blah.
- [36:19]
Host 1
Because it's like depressing too that it's like a tombstone.
- [36:22]
Tracy
I know. Really have to. Could you not just call it a rectangle something death mark.
- [36:33]
Host 1
Sorry, I shouldn't be joking about this.
- [36:35]
Tracy
But you have to. I mean, what else do you do? It turns out because I'd started the prednisone, which I was told to do, it had affected the biopsy in a way that made it look like this. So there was an explanation. So they amended the report and so all of that was a little bit unnecessary, thank goodness. But on the plus side, you know, I had a PET scan. There's nothing there. Fantastic. So at each point, I'm like, okay, let's just go with the good stuff. I don't have cancer.
- [37:10]
Host 2
You've gone through all these diagnostic. You've done lab work, you've done biopsies, you've done PET scans. Do we finally have an answer?
- [37:19]
Tracy
Yes. So I have Pemphigus vulgaris, which is a horrible name for the sound, like.
- [37:28]
Host 2
A Harry Potter spell.
- [37:30]
Tracy
I was thinking the same thing.
- [37:32]
Host 1
Were you, like, turn into something ugly?
- [37:34]
Host 2
Yes.
- [37:35]
Tracy
It's a horrible name, isn't it? So my body attacks and destroys the sticky substance that keeps your cells together, which is not great. I don't know why it does that. So vulgaris is anywhere throughout your mucous membranes.
- [37:51]
Host 1
Gotcha.
- [37:52]
Tracy
Yeah. Mucous membranes are in many places. Your eyes, your nose, your mouth, stomach, et cetera, et cetera. So that particular variant is. That's what that does there is pemphigus, which attacks the skin on the outside. So that's probably why my skin's so sensitive, so you can get blisters on the outside. But mine is Pemphigus vulgaris. Now, it's pretty rare, I think. I had a look at how many people have it, and there isn't many. So the Australian Blistering Diseases foundation says it's about 1.3 to 2 per million people have it.
- [38:33]
Host 1
Wow.
- [38:34]
Tracy
I know. And in the US I had a look at the US about 17,000 people have it, and I think your population is about, what, 230 million or something?
- [38:43]
Host 1
That's a lot. So, yes, you know that. And I have absolutely. No.
- [38:47]
Tracy
I could be completely off the mark there, but no, you're. You're spot on.
- [38:52]
Host 2
I had to come up with that statistic myself. And so for the. For our listeners, I usually like to give a little breakdown of.
- [39:00]
Tracy
Yeah.
- [39:01]
Host 2
What these.
- [39:01]
Tracy
Because it's hard to explain. It's hard to explain.
- [39:04]
Host 2
It's very hard to explain, but I'll try my best. You can think of the skin and the mucosa as layers, right?
- [39:13]
Tracy
Yes, exactly.
- [39:13]
Host 2
You have your.
- [39:14]
Tracy
If you.
- [39:14]
Host 2
Most people know, the skin, Right. The epidermis, the dermis. And if you think of those layers like a sandwich, your disease is attacking the mayo, Right? The mayo is what keeps those layers together.
- [39:30]
Tracy
Exactly.
- [39:31]
Host 2
And if you don't have the mayo, the layers slide apart. And that's. If you think of a blister, right. There's rubbing between the layers, and the layers separate and it fills with fluid. So in your case, your mouth, you were forming these blisters that created separation between the layers that was filled with the blood because probably the blood vessels were torn as part of that process. And the reason why your labs were all normal was because it's a genetic disorder. Right. If you had. I'm just, you know, pulling diseases at random. But if you had cystic fibrosis, which is a disease of your lungs, and you took a blood test for the cells that are in your blood, it would be normal. But if you ran a genetic panel on the actual chromosomes and genes, you would find the problem. So that's why, going back to our earlier conversation about you kind of have to know what you're looking for when you order things, right? If no one ever ordered that DSG3 test, you would have had forever normal labs.
- [40:42]
Tracy
Exactly.
- [40:42]
Host 2
Everything.
- [40:43]
Tracy
Exactly would be normal.
- [40:45]
Host 1
My brain is still trying to comprehend that there's, like, stuff between our layers of skin. Like, in my mind, there's nothing there. This is an entirely new way of looking at the layers in the body. For me, like, the fact that this even exists is something I didn't understand about my body.
- [41:01]
Tracy
It's so random, isn't it? What? Why on. Why on earth it. My body specifically attacks. That is. Yeah, it's. It's nuts. And that's why no one's ever heard, like, nobody's ever heard of it. I've been to so many for other things, and I've been to hospitals for other things and they've never heard of it. They. They're like, can you spell that, please? I don't know what that. Never heard of it. I know.
- [41:26]
Host 1
I think you're just really into Harry Potter.
- [41:28]
Tracy
Yeah, I wish they called it something else. I remember only one time I went to the hospital for. Because it was so painful, just one time, and they hadn't heard of it.
- [41:40]
Host 2
So did they. Did they determine that the. The vine, vegetables and the fruits, that that is a trigger?
- [41:48]
Tracy
It turns out that the acidity of the fruit, which is why the raw fruit does it rather than the cooked fruit, is doing the issue. Some people with this, the disease has other triggers, but fruit and that acidity just happens to be my trigger. So I continued seeing the immunologist in Canberra, and we tried three different immune suppressant medications on top of the prednisone, and none of them were working. I think one worked. It suppressed the antibodies, it suppressed my immune system, but that was the one that was wrecking everything else. So, you know, that couldn't work. So I. Throughout all of this, I keep doing my own research and thinking there has to be a better way I can't stay on prednisone forever because it's just not something you can do. So I came across a medication called rituximab, which is an infusion. So the best way to describe it is similar to. It's not chemotherapy at all, but it's similar to a very low dose chemotherapy, very low dose in that it suppresses your immune system. And so you have this infusion. And the idea is it suppresses your immune system, which stops the disease doing what it's doing. And after doing some research, other countries are using it. It's like a gold standard for this disease. So I go to the immunologist and I say, can I have rituximab? And she says, no, you can't. And I said, well, you know why? She said, in some patients, the rituximab can trigger a brain disease that is worse than your disease. And there's no treatment for this brain virus. So of course I'm thinking, well, I don't want a brain virus too. The brain virus will kill you and there's no treatment. I said, okay, I don't want it anymore. Thank you. So I continue and then I. Only for a couple of weeks. And I'm thinking, no, I do want rituximab. And that shows you how desperate I was to get off the steroids. Like I'll risk a brain disease if I can just stop taking prednisone. I mean, what are the chances of me triggering a brain virus? Probably pretty slim. So I do more and more research and I come across a dermatologist in Sydney who. And you know, the website shows all this information and it says that she's an expert in pemphigus. Now I didn't realize at any point up until now that the specialist I should have been seeing for pemphigus is a dermatologist, not an immunologist. I should never have gone to an immunologist. I should always have been a dermatologist. And before this. Dermatology to me is someone you go to if you have a rash or you have maybe acne or something like that. I never considered that they would do something. But I mean, it's skin, it's a blistering disease.
- [44:53]
Host 1
Aaron, would. Would your brain immediately go to see a dermatologist in this situation or like.
- [44:59]
Host 2
I, I thought you would be seeing an ENT because just that's, you know, ear, nose and throat.
- [45:07]
Host 1
But I don't.
- [45:08]
Tracy
Yeah, I didn't see an ENT until after the diagnosis to check to See what was going on still. Yeah. And weirdly, nobody referred me to an ENT until afterwards, which is a bit strange when you think about it. So I, I was um, in ahn about seeing the dermatologist because again, it's another trip to Sydney. Is she going to be able to help me? It's another $400. She's private.
- [45:35]
Host 1
So just for our US listeners or not, people who don't have kind of standardized healthcare.
- [45:40]
Tracy
Yeah.
- [45:40]
Host 1
What's the typical pay difference from a private and a public practitioner in this space?
- [45:47]
Tracy
So public is you don't pay anything. So the immunologist in Canberra, I didn't pay anything to see her. But the trade off is you may have to wait. So generally a specialist, you expect to pay if you see them in their private rooms, maybe about $300 is about the average.
- [46:05]
Host 1
Okay.
- [46:06]
Tracy
But you do get some back from Medicare, so you may get about half back. So out of pocket, about150.150. So for the private dermatologist that I saw, again, I could have seen a dermatologist in the public system, but who knows how long that would be.
- [46:24]
Host 1
Also this one person was an expert. So, you know.
- [46:26]
Tracy
Yeah. And it was showing that she's a world, you know, world renowned expert, blah, blah, blah, blah. And she's even got a blistering disease foundation. Like she's done a lot of things. She's a professor and doing my research. She's the person to see. But I, I had to do all of that. At no point did anyone.
- [46:46]
Host 1
Of course not.
- [46:49]
Tracy
Fine. So I was, I'm in an rn. I'm thinking, oh, it's more money, it's more travel. Is anything going to be different? So I thought, no, stop it, I'll just do it. So I went to see her. She was amazing. She said, is it taking you so long to come and see a dermatologist? That's my question too. And I said, I can't take prednisone anymore. What do you think about rituximab? She said, yeah, of course you can have rituximab. Of course. I said, but the other doctor said, I'm gonna get a brain disease.
- [47:23]
Host 1
She's like, that's like a very rare.
- [47:25]
Tracy
Yeah.
- [47:25]
Host 1
Small group of people, right?
- [47:27]
Tracy
Yeah, it's, it's, I think it's like if you look at paracetamol warnings, nobody would ever take them. Now I'm like, well, you said I'm gonna get a brain disease and die from that. But you said there's absolutely no problem. Which is great. So I know, I'm like. But I mean, the immunologist, she was really good. She was great. I had no problem with her care that she gave me. But this is not her field. Yeah, she. She's probably never seen this disease before. The dermatologist, she knows all about it. So she's like, yeah, you can have ritiximab. Let's do some blood to make sure you don't have any underlying illnesses or infections of any kind. Because once you have rituximab, it's in there. It's not a pill. You can't take it out. And within weeks, I was back in Sydney Hospital having rituximab. So what the rituximab does is they infuse it into your body. It's a huge, big bag. It takes. The first one took eight to 10 hours, I think, to infuse in which, you know, it doesn't hurt and it isn't so bad. It's a weekday. I'm lying down, Nurses are bringing me food. Worse things I could be. I could be having a biopsy in my mouth again.
- [48:46]
Host 1
The chillest person who's ever been on this show. The chillest person.
- [48:50]
Tracy
You know what? There was a funny story, though. I remember one time I had it. And the nurses get you all prepped, and they give you a huge dose of prednisone, about 125 milligrams before you have the infusion because it's quite common for an anaphylactic reaction. So they give you that to try and reduce the risk of that. So the nurses come in and they do all of that, and then they bring in the medication and they. They got hazmat suits on. Like they are. I'm like, oh, okay. That's. What. What's with all of that? The medication's got its own special container, and. And one time this nurse accidentally touched it on a piece of her skin. And she rushed to the sink right next to me and scrubbing, scrubbing, scrubbing, scrubbing. Like. Like it's, you know, acid or something. And I'm about to have a liter of this injected into me. She's right next to me. She couldn't have gone in the other room. And I'm just. I'm like, why are you off Summers? But thought that was quite funny because she was just freaking out. So the infusion.
- [49:55]
Host 1
I would be terrified.
- [49:56]
Tracy
I was just like, why? You did. I just thought you couldn't go in the other room and freak out. I'm like, okay, stick it in. And the infusion's fine. The first time I had it, they said, you have to tell us if there is any hint of itchiness in your mouth, any hint of anything going on. So. So I remember sitting there and I'm like, I need to have this infusion. I'm not taking prednisone anymore. I'm not doing this anymore. I need this infusion. It's a 10 hour round trip to Sydney. You know, I'm having it done. So my mouth started itching a little bit. Should I tell them? And I thought, I'll just wait till she comes around and does it oms next time.
- [50:38]
Host 1
Of course you did. Of course you did.
- [50:40]
Tracy
Of course I did. So it started itching.
- [50:42]
Host 1
I've been on this episode long enough.
- [50:43]
Tracy
To know, you know, so I started itching a little bit more and I'm thinking, oh, I'll let them know. So my mouth's just. I don't know if it's itchy or not, but maybe a little bit itchy. I'm not really sure. Maybe we can just. It's fine. Just gonna do all right. And then they like, bam. They stop the medication. They get the rapid response team from the A and E downstairs, and they're all staring at me and they're like, is your throat swelling? You get. There's four doctors all just standing at me waiting to see I'm gonna stop breathing. I'm thinking, oh no, am I going to stop breathing? And so we're just sitting there for about 20 minutes and they're saying, how do you feel? I said, I think we can just continue. Just start it again. Let's just go. I don't want to come back. So we did it. It was, give it a go, it'll be fine. So we just did it. I had two doses in two weeks. It was all fine. It makes you really tired. Other than that, I don't really get much side effects for about a week or so. I'm super tired. But over. Oh, it's been. I've had about five doses of that now every six months. It's supposed to last about 12 months, but for some reason in me only lasts about six. So, yeah, when I'm on treatment and the B cells are wiped out and the antibodies are down, it's great. I can eat whatever I like without triggering anything. As soon as the B cells come back and the antibodies, that's when the symptoms all start again, which happened about four months ago. It started happening again. So I Just had another rituximab about two weeks ago. And yes, I don't have to take prednisone anymore. I now do have to deal with the side effects of prednisone. I just saw an orthopedic surgeon, actually, for my knees. Prednisone is really bad for your joints. It causes all sorts of issues. That's the side effects of prednisone. I now have issues with my hip joints and my knee joints. And at one point I had a few MRIs and they thought I had osteonecrosis.
- [52:45]
Host 2
Osteonecrosis something.
- [52:48]
Tracy
Yeah, which it said on the mri. Possibility of osteonecrosis. Bone death.
- [52:53]
Host 2
Yeah. So the steroids cause a lack of blood flow, two areas of the bone, and so then the bone dies and that's called osteonecrosis. So, yes, steroids have known side effects for bone.
- [53:09]
Tracy
Yeah. So unfortunately I'm dealing with that. Like, my knees are pretty bad. I can't do exercise at the moment. It sucks. But I will get back to it. So throughout all of the journey, I've just kept busy, basically. I, you know, I've got a red belt in taekwondo. I work full time, I studied, got a diploma and I got two children. Just keep going. Really, just like dory. That's all you can do, just keep going. But I, the, and the reason, one of the reasons I did this podcast and I love your podcast, I've listened to, I've read pretty much every episode and I remember thinking, I wonder if there's anyone who's done anything about pemphigus. Can't find anything. And I've done so much research. I can find dry medical things like studies, which I can't understand, but I can't find anyone's story. There's support groups and things like that, but there's nothing, no one's sort of history.
- [54:12]
Host 2
I will tell you that what I am always surprised at, on, on TikTok when I post, you know, I, I have a lot of educational content about rare disease and if, you know, I'm just making these numbers up. But if I did a post about Pemphigus vulgaris, I might get a hundred people commenting. I also have this. I, me too, you know, hearted and liked and whatnot. There is no way that it is only one in a million people. I think that now that we have more people sharing their stories in formats like this, you know, on, on TikTok, on Reddit, more people are able to find one another and then you can learn from One another.
- [54:57]
Tracy
Exactly. Exactly. That's it. And you can say, you know, rituximab is fine. There's a lot. There's support posts for that on Facebook and things like that. And there's a lot of people who are worried about it because they don't know. And I didn't know at that point, but if someone had said it'd be fine, you know, it's fine. You don't have to live in a bubble or something like that. It really does help.
- [55:22]
Host 1
I think it's also helpful to just provide a place for people to talk about it, regardless of whether their views agree or not, because I think when you're making decisions about your body, it's awesome to have affirmative on your choices, but sometimes it's really good. Good to know really clearly what those outcomes are. And it's interesting because you kind of started fully with a negative and then finding out the positive. But oftentimes I feel like in. In communities, we talk always about the positive, and sometimes it's really important to mention those negative things so that you go into it holistically, understanding what you're getting yourself into. I mean, some people may only have prednisone as a choice, but they should know what that means.
- [56:05]
Tracy
Right, Exactly. That's it. If I could have, you know, I don't. I look back now and what's done is done. That's fine. I don't really think about it too much. But if anything, if I could have not had to have taken that prednisone, and I don't have to take it because I'm on rituximab, if I could have not taken that even for a year, left, my joints could be so much. My joints are causing me more of a problem than my disease right now. Much more of a problem. And that's because of prednisone. So if I could have minimized that, that would have been amazing.
- [56:41]
Host 1
Well, there's one thing you've shared in this episode that I think is going to help a lot of people, which is just isolating the right doctor to go to, because none of us would have guessed that it was a dermatologist.
- [56:53]
Tracy
No. Right.
- [56:55]
Host 1
Erin is the pro, and she would have said your nose and throat. So I think for people listening to this episode who think they might have this, at least it gives them a very clear place to start, and that is probably more than it's available in an easily accessible way anywhere else on the Internet.
- [57:15]
Tracy
Exactly. And do your own research, too. And don't worry about going to different doctors. Because if I hadn't done my own research and if I hadn't change to her, I don't. And I've continued along the other path, I have no idea where I'd be right now.
- [57:30]
Host 2
I say this all the time. When you go to a doctor, you are asking for their opinion. We are practicing medicine. We are giving opinions. And it doesn't mean that that original immunologist was wrong when they told you that there was a possible brain virus side effect. They're correct. But in the opinion of your dermatologist, who has more experience with patients using the drug, the rewards outweighed the risk. And so that's why I tell people all the time, get a second opinion. Get a second opinion. Your doctor should not be threatened by you getting a second opinion.
- [58:12]
Host 1
Ooh, Bold words from Aaron.
- [58:15]
Host 2
Well, two. Tracy, thank you so much for sharing your story.
- [58:19]
Tracy
Thank you.
- [58:20]
Host 2
And you are the voice of pemphigus vulgaris.
- [58:25]
Host 1
You're creating what's not out there. So you're going to help someone.
- [58:28]
Tracy
I just wish they had a nicer name.
- [58:31]
Host 1
Maybe you can advocate for that.
- [58:33]
Host 2
You should keep telling that. We need disease rebrands.
- [58:37]
Tracy
I was just thinking, actually, no one's ever heard of it anyway, so I should just make up my own name.
- [58:41]
Host 1
People do that with other diseases. They'll be like, it's the da da, da disease, and then it'll have, like, some hideous, awful name. So just come up with something, like, kind of fun. Your new challenge. Your new challenge is what is the fun name for this?
- [58:56]
Host 2
We can. We can ask our listeners to comment and. And come up with a new name. A rebrand.
- [59:04]
Host 1
Yes, please. Please help us rebrand this disease.
- [59:11]
Host 2
All right, Anna, I'm gonna quiz you, okay. What was the name of this week's condition?
- [59:17]
Host 1
Bulgariso. I heard it, like, 10 minutes ago. How do I not know it?
- [59:26]
Host 2
Pemphigus vulgaris.
- [59:28]
Host 1
Pemphigus vulgaris. And then. Yeah, it's a spell. It's a Harry Potter spell. You cannot convince me otherwise. We're gonna just remind you guys before we get into the nitty gritty of the comics. Plus, please help us rename this thing. You made a great point earlier when we weren't recording Erin about another condition that had a rebrand or has a different name. Can you just repeat that for our lovely listeners at home?
- [59:50]
Host 2
Well, a lot of diseases and rare diseases suffer from a lack of awareness and attention. Because if you suffer from a lack of awareness and attention, you suffer from research interests and you suffer from lack of research dollars. So the disease I was talking earlier is ALS or amyotropic lateral sclerosis, also known as. Also known as Lou Gehrig's disease. Now, Lou Gehrig was a famous Yankees pitcher, but it's just to kind of hammer home the point of, if you have a rare disease but nobody knows about it, how are you ever going to get help and drive the research? How are you ever going to find other people who have the same problem? And that's exactly what Tracy was mentioning, that there. There really aren't any stories of people talking about their experience with this disease.
- [60:47]
Host 1
And, I mean, I know we're joking about the rebrand, but having a catchier name, a name that someone like me, 10 minutes after hearing it can remember and tell their friends about, is kind of important. It seems silly or seems maybe like it doesn't have a lot of value, but that ability to share is so important. And to that point, one of the things that we were talking to her about is because these communities don't exist, it takes someone like her to start those communities. If there's not a Facebook group, if there's not a foundation website that has great resources. So it takes us as patients to be those activators for knowledge sharing. Because the medical community is really great at talking to each other, but not necessarily great at talking to the general public, as evidenced by the terrible names many of these conditions have.
- [61:38]
Tracy
Yeah.
- [61:39]
Host 2
And I just. I just looked it up because I had a conversation with someone who diagnosed themselves over TikTok. And the formal name for this disease is called, called retrograde cricopharyngius dysfunction. And the name that is on TikTok is called no burp syndrome. So these are a group.
- [62:01]
Host 1
No burp syndrome. I'm in.
- [62:02]
Host 2
You know what that is?
- [62:03]
Host 1
I'm in.
- [62:03]
Host 2
Right?
- [62:04]
Host 1
I'm in. Tell me more.
- [62:05]
Host 2
You can't burp. And it is a problem where there is a muscle called the cricopharyngous muscle is too tight around your esophagus, and so it doesn't allow air to come up like a burp. But people were sharing their story online. They're like, oh, my God, I also could never burp. And I had all these other issues that were related to it. But if you didn't realize you had retrograde cricopharyngeal disease, whatever that is. But you said, wait, I. I think I have no burp syndrome. Right.
- [62:38]
Host 1
Yeah, I. That's. See, that's a great rebrand. And I think that this is another great example of how sometimes patients participation in their communities can dramatically change that disease's ability to get diagnosed, to get research dollars, to just get public interest. Like, no, burp syndrome is interesting. So we joke about it, but it's actually kind of important. And I think that if you're in a position with a condition where there's not that out there, that it's not a bad thing to take it upon yourself to try to fight for that, as silly as those things might sound.
- [63:13]
Host 2
And listen, most names are either there can be named for the anatomic region that it's affecting, but a lot of times the names are made up from the 18th century White men who discovered it. Right.
- [63:28]
Tracy
Yeah.
- [63:29]
Host 2
But, you know, kudos to Tracy for coming on here and sharing her story. As we said, we have never had a more chill guest who just rolled with all the punches.
- [63:41]
Host 1
And, you know, it's. It's interesting, and it's hard for me to fathom being that. That okay with it, but every person is going to react different to their illnesses. There's no right way to react to a diagnosis. And even though she was so chill and so different, she still went through the same phases. Right. She still had that apathy. She still. It just manifested a little bit differently. So I think if there's one thing I can take from this lesson there. This lesson, this podcast is now a class you're gonna get tested after. The one thing I can learn from this podcast episode is that you shouldn't expect a patient to react in a certain way, and there is no wrong way to react. And honestly, maybe her being one of the first people that are sharing the story and being so chill about it is exactly what this condition needs. Maybe she'll make it less scary for a lot of people. So I think that, you know, who we are as people doesn't change when we get diagnosed with something. We have the same personality whether we have a chronic condition or we don't. So it was fun to see someone that had, you know, just such a different vibe. I loved it.
- [64:54]
Host 2
Yeah, amazing. I mean, if you were told that you're going to have a treatment where you could go into anaphylaxis at any moment and you start feeling the symptoms and you're still calm enough to. To be organizing and tell and orchestrating the nurses and physicians what to do.
- [65:16]
Host 1
Next, and almost like, slightly perturbed that they're worried, like, come on, guys, I got this. I'm good. I loved that. That is such a vibe. Like, I know, I'm probably overusing that word, but that is such a. That is such a special, like, reaction. And good on her because if someone had told me some of the things that they told her, like that she could potentially die from this condition, I think I might have gotten trapped in that, especially without any knowledge of anyone else successfully being treated. So I really do think it's a benefit to this condition that she was kind of the first person out there telling her story.
- [65:56]
Host 2
Well, we always learn something new.
- [65:58]
Host 1
Definitely.
- [66:00]
Host 2
Until next time.
- [66:01]
Host 1
See you guys later. The Medical Detectives is a Soft Skills Media production produced by Molly Biscar. Sound designed by Shane Drause. If you have a medical story you'd like to see featured on the Medical Detectives, please email it to stories themedical.
- [66:27]
D
Detectives podcast.com the information provided on the Medical Detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show. If you are experiencing a medical emergency, please contact contact emergency services immediately or consult a qualified healthcare provider.