Tanya Dupagne

[00:00:00] Speaker A: That was Black with Wonderful Life. And PJ and Mitch in the studio, they both sort of said that they liked the song. It's very relaxing, very nice. [00:00:09] Speaker B: I liked it. Yeah. [00:00:10] Speaker A: And we have a special guest. As we often do in on Nick's Nuggets. We want to have guests. And today we have Tanya, who's a. I'm gonna start off saying something. Confident is a very bright. You can tell by the. Tanya's smile, she's a very bright, bright, confident young lady. [00:00:31] Speaker C: Thank you. [00:00:32] Speaker A: So tell us a little bit about yourself, Tanya. [00:00:36] Speaker C: Okay, so I've spent 20 years working in community development sector. So I've worked with around 150,000 kids around the world. And I specialize in working with children affected by trauma and torture situations. So I'm currently unable to work at the moment because I'm extremely, extremely ill and was diagnosed with disability in 2019. So I've been sort of transitioning from being able bodied and working 120 hours a week to basically being almost bedridden now. [00:01:15] Speaker A: Oh, that's. [00:01:17] Speaker B: That's a shame. [00:01:18] Speaker A: That's. Oh, you're not supposed to blow me away just as quickly as that tent yet. So 120 hours a week, you were saying? [00:01:28] Speaker C: Yes, I was running camps in the Wheat Belt for children from across wa. So primarily kids affected by trauma and torture situations, so refugees who have lived through war in Syria, Afghanistan, Iraq, those kind of places, and children who have been through trauma situations here in Australia as well. And we taught life skills. So, you know, kids go in for counseling and they say to them things like, you need to learn to control your anger or, you know, you need to work on your perseverance. But no one actually teaches them how to do it. And that's the bit we were doing. So we were doing the life skills teaching. So teaching them respect, trust, self confidence, emotional regulation, anger management, all those kind of things, but doing it in a way that's fun so they don't realize they're learning as we go. [00:02:25] Speaker A: That would be a fascinating area to be involved with, I would imagine. [00:02:32] Speaker C: It's really interesting because every child that comes through is different, every volunteer that comes through is different. So you've got to work with them all differently. But we got short term results, but we also got the long term results as well as well. And that was what was really important to me. Not just seeing the change in them at the end of the week, but seeing it for years on. We're actually having a reunion next weekend and we've got some of the kids that started off as campers who then came back as volunteers, and now they're like adults themselves. So we can see the impact the camp has had over many years, not just the one week. [00:03:12] Speaker A: So you were saying. So how far is geographically? How, how far is or has this taken you? [00:03:22] Speaker C: Well, camp cooling was only for kids in WA. [00:03:25] Speaker A: Yeah. [00:03:26] Speaker C: So we had kids from 339 towns across WA. Families were traveling 25 hours to bring their kids to us. [00:03:35] Speaker A: Are you serious? [00:03:36] Speaker C: Yeah. And we had a three year wait for some children coming in to camp. So I learned how to do this kind of work overseas. I spent three years working at a camp for underprivile kids in America than I did five years in the townships in Africa. So I sort of learned how to work with no money. [00:03:56] Speaker B: Yeah. [00:03:57] Speaker C: Like work on a shoestring and get results with very little funding. So that's sort of what I was doing here as well. [00:04:04] Speaker B: That was a question I was going to ask, is it funded by anybody or. [00:04:09] Speaker C: So we had two different programs running, and one was parents could pay to send their children to camp, which then helped us offset the cost of. Okay, couldn't afford to come in. But the children that are affected by trauma were all sponsored. So people sponsor a child, you know, to come in and have that experience. [00:04:30] Speaker B: So it wasn't government funded or we [00:04:33] Speaker C: received a little bit of government funding. And the local government, the Shire of Cool and where we were doing the program, they supported it as well. But largely, you know, community support and things like that, and very limited support staff. It was all volunteers. So I had a team of 400 volunteers working with us and coming in. [00:04:54] Speaker B: And it's fantastic. [00:04:57] Speaker A: You know, just digressing a little bit without trying to sound selfish here, that, you know, since I'll be doing my time here at ipl, I always, I almost feel guilty that I learned so much. And it's not about me. Yeah, it's about the, you know, the people come in and it's just amazing how much I've learned. I mean, you're talking 400 volunteers, you're talking about 120 hours a week. You're talking about dealing with kids with trauma and torture. And I don't know about you, Mitch, but I never knew these, these places existed. [00:05:36] Speaker B: No, and I was thinking that too. It's, it's, it is a shame that you don't get more recognition for it. You know what I mean? Like, you've been doing this for how long did you say? 20 years? [00:05:46] Speaker C: 20 years. Yeah. The program's not. The Camp Coulomb program itself is not running anymore because I'm too sick to run it. [00:05:52] Speaker B: Okay. [00:05:53] Speaker C: Ironically, just before I was diagnosed, I got funding so I could start training up. People said that if I ever got sick, someone was able to run it, but I got sick before I could run that program, so that's no longer running. So I'm doing lots of work in the disability advocacy space now and doing a lot of mentoring to mentor, like, the next generation of people that are running community development programs. I've got skills that I've learned over the years, so I want to put that to use. Even if I can't physically run the programs, I can teach other people aspects of it so that they can still have an impact on kids. [00:06:33] Speaker B: Yeah. [00:06:35] Speaker A: Has. There's a lot of questions here. Has. With your. With your disability, which I think you said was five years. Was that right? [00:06:46] Speaker C: Yes. I've had symptoms for a very long time, but I was only diagnosed five years ago. It took 10 years to get a diagnosis. So I was running camps while I was sick, but I didn't know how sick I was. [00:06:59] Speaker A: Jeez. And you seem very. A person who's been diagnosed and is. You seem very upbeat still, Tanya. I mean, that's amazing. I mean, hold on. It's great. [00:07:16] Speaker B: I noticed that as well. Big smiles and. [00:07:18] Speaker A: Yeah. [00:07:19] Speaker C: I think the kind of work that I've done for so long, you build up coping mechanisms that are really good because you see a lot of horrific things and hear lots of horrific stories, so you build up, like, a resilience around it. And that's helped me through my diagnosis and everything as well, especially because my major illness is not recognized in Australia, which is why it wasn't diagnosed, and I can't actually get treatment here in Australia for it. If doctors are caught treating the illness, they run the risk of being struck off the medical register. So. Wow. This is. Yeah, you've got to have resilience to deal with that kind of illness. [00:08:07] Speaker A: Would you. And would you like to speak about your illness or do you prefer we talked about. [00:08:13] Speaker C: I'm happy to speak about it because the more we speak about it, the more awareness is raised and the more likelihood there is of getting change in the future. So back when I was working in America 20 years ago, I got bitten by a ticket, and the camp was in what we now know was a Lyme endemic area. We didn't know that at the time. Lyme disease is not recognized in Australia, so all the doctors agreed I was seriously ill. But they didn't actually test or diagnose for it. So it took a very well educated doctor who said, hey, we might need to send your blood over to Germany and get it tested. We sent my blood over to Germany and got it tested. It came back positive for Lyme disease, but also a number of other tick borne infections at the same time because Lyme rarely acts on its own. But by then I'd already been sick for 15 years, so the illnesses have been in my body. When the tick bit me, it put up the Lyme bacteria into my body. [00:09:16] Speaker B: Okay. [00:09:17] Speaker C: But for 15 years it's been swirling around my body and multiplying and getting into all my organs. Now it's affected my heart, my bladder. I've got braces holding my legs up. I need a walk, at a walk or a wheelchair. So it's literally in every part of my body. And in Australia now, we're allowed to treat the symptoms. So we can treat my fast heart rate, we can treat like the bladder issues and things like that, but we can't treat what's causing it. So it's like putting a band aid on it. [00:09:51] Speaker A: It's, it's ironic and I don't know a lot about a lot of things, but I have a, a niece in Melbourne. Her son got diagnosed with Lyme disease. And your stories about doctors I can resonate because she said, yes, nobody is not recognized here, blah, blah. And I don't know what happened exactly January, but I do know she took her son to America for two weeks. [00:10:17] Speaker C: Yes. So I would like to go to Cyprus and have treatment. There's many treatment options available, but for me, because of all my other complications, Cyprus is the best option for my specific situation. But it's going to cost $50,000 to do that. And obviously I've worked in the community charity space for many years. I haven't been able to work for a few years like paid work. So I don't have a spare $50,000 to just go and get treatment. So it makes it really hard. And there's a lot of people in my situation across Australia. I'm an ambassador for the Lyme Disease association of Australia. And you know, they estimate there's hundreds of thousands of people across Australia that have it. I got bitten in America, but there's a lot of people who have never left this country that have tested positive for Lyme. And yeah, it's one of the most controversial diagnosis you can get. I've, I've worked in Africa, I've worked in Vietnam, and I've seen health systems and I always thought, you know, our health system is great if I ever get sick. [00:11:26] Speaker A: Yeah, yeah. [00:11:27] Speaker C: Worries like we've got one of the best health systems in the world. But I've since discovered for certain illnesses we have one of the best health systems. [00:11:35] Speaker B: I don't mean to ask an ignorant question. Why isn't Lyme disease treated here? [00:11:42] Speaker A: Good question. [00:11:42] Speaker C: That's the million dollar question. So according to the Australian Medical Association, Lyme disease does not exist in Australian ticks. In my circumstance, it's actually irrelevant because I didn't get bitten here, I got bitten in a Lyme endemic area overseas. And there's other people from my camp that have tested positive to it. It's by not recognizing it and people getting sicker. So like 10 years for me to be diagnosed in that time I got sicker and sicker. Ten years ago I could walk, I could. My heart wasn't playing up and everything. So it's cost the medical system a lot more money by not diagnosing me because now I require more support. [00:12:28] Speaker B: Yeah. [00:12:29] Speaker C: So, you know, that's why it's so controversial. [00:12:33] Speaker B: I don't want to say the bad words, but that's wrong because you are an Australian, you should be treated the same. And I don't want to be controversial. [00:12:42] Speaker A: No, you know, you can say, yeah, [00:12:44] Speaker B: you should be treated the same as the next patient. And this is a serious disease by the sound of it. And I think that it should be treated like the common cold. [00:12:55] Speaker C: Yeah, well, you would think it would be relatively easy, but unfortunately it's not. There is a lot of controversy around what the best treatment is. Yeah, okay. But there are some very well educated doctors doing amazing research. Unfortunately, they're not being heard. So that makes it really hard. There is a lot of people, as you say, who have traveled to America, Germany, Cyprus and now they're well. So if they can get better, it shows the treatment works it. [00:13:29] Speaker A: And I'm sort of, you know, we sit here and we hear things like this tenure. And I think what sort of I say frustrates me, that's not the right word. But what I find strange, that's a better way to put it, is that I think there was a thing on Spotlight on Channel seven where they had a doctors and people arguing about puberty blockers. [00:13:58] Speaker B: Okay. [00:13:59] Speaker A: And I think everyone has their opinion on that. I'm not saying right, wrong or indifferent. But that gets a headline, which is sometimes, I would assume, a personal choice. You don't. Yours is not a personal choice. You actually Got a disease and yet you can't get on Channel 7 or Spotlight. But all these other issues in the medical thing can. [00:14:27] Speaker C: Yeah, it's very hard to get any form of media coverage and that's why I speak about it as often as I can. Because the more we talk about it, the more likely we are to get change. If we keep being silent about it, nothing's ever going to change. Meanwhile, you've got all these people that are extremely sick who can't get any sick support. And it's the financial impact as well. Because if you have a disease that's not recognized in Australia, how do you get Centrelink and ndis and everything like that? Yeah, I'm. I don't know if lucky is the right word, but I have so many other diagnosis. I managed to get onto Centrelink, disability and NDIS because there's so much else wrong with me, but there's a lot of people that can't access those services. You know, I thought I was very well equipped to deal if anything went wrong. I had mortgage insurance, I had income protection insurance, I had everything like that. Mortgage insurance doesn't pay out. When you get Lyme disease, there's A list of 11 approved diseases that you're allowed to get. And if your disease isn't on it, [00:15:32] Speaker B: then, yeah, we need a change. [00:15:33] Speaker C: I think, you know, get the money. [00:15:36] Speaker B: I, I had a question. You. You say you're an ambassador for Lyme disease? [00:15:42] Speaker C: Yeah, I'm ambassador for Lyme Disease association of Australia. [00:15:44] Speaker B: Do you have a website or like a petition, like to get this. Not recognized or legalized, but great idea. Do you have something online? [00:15:55] Speaker C: All the information is on the Lyme Disease association of Australia webpage. People can go on there and there's heaps of information about the issues and what's happening at the moment. And there's actually a good friend of mine, his name is Tanner, he's in Victoria and he's 16 years old and he's about to do a 90 mile walk. [00:16:21] Speaker B: Oh, wow. [00:16:22] Speaker C: To raise money to go towards research for Lyme disease. He's a Lyme patient himself. [00:16:29] Speaker B: Okay. [00:16:29] Speaker C: He's been through treatment. He's now improved so that he's well enough to do the walk. [00:16:35] Speaker B: Fantastic. [00:16:35] Speaker C: And he's trying to raise money and awareness for Lyme by doing this. Him and his friend Ed are doing it in November. [00:16:42] Speaker B: Okay. [00:16:43] Speaker C: And they've just launched. They're trying to raise awareness and money for that at the moment. [00:16:47] Speaker B: I think that's what we need over here. I mean, I will Be honest. I've never heard of Lyme disease. [00:16:53] Speaker A: Yeah, but that's. I mean, I only heard it by per chance with my niece's son. And it used to put. Put posts up on the Facebook saying that her son, she's really happy because he could walk 100 yards down the street. And then the next two weeks, you know, he's. But he's. She said he's just lethargic all the time. [00:17:16] Speaker C: There's no guarantee for me because I've been sick for so long that treatment is going to. I'm never going to be the way I was. But even if we can get a slight improvement so that I stop deteriorating, that would be great. So we're looking at, at the moment, potentially crown crowdfunding to try and. Yeah, you know, get me over to Cyprus. [00:17:37] Speaker A: That'd be great. I mean, you know, all those. Go fuck. Excuse me for interrupting. All those gov fund me pages of people who go to Bali and get drunk and, you know, want to come home and you know, they get fifty hundred thousand. And yet somebody, something like you, again, it's not your choice. You would think that a GoFundMe page, something like that would. [00:17:58] Speaker B: And you've got one. [00:17:59] Speaker C: You say, we're in the process of setting all that up at the moment. [00:18:04] Speaker B: I'll get the address. [00:18:05] Speaker C: Because it's, it's one of those things where we need people to go and have the treatment so we can prove it works. Yeah, because if you're gonna argue it, you know, that we need access to treatment here. You've got to show that the treatments are working, which they are, as you say, you know, somebody who's been treated. So it's, it's not an easy fix. It's quite a brutal treatment, especially for me being sick for so long and having lots of complications with it. But. [00:18:34] Speaker B: But it's something you want to do. [00:18:36] Speaker C: It's worth a try. Even if I can improve slightly so that I can, you know, do more during the day or do more during the week or anything like that. [00:18:46] Speaker B: I do have another question, but I don't want to trigger you. Is it life threatening? [00:18:53] Speaker C: It depends who you are. Officially. No, it's not. [00:18:56] Speaker B: Okay. [00:18:56] Speaker C: But in saying that there are people who have died from Lyme disease. [00:19:00] Speaker B: Okay. [00:19:00] Speaker C: So if you were to ask the medical profession, they would say no. [00:19:04] Speaker B: Okay. [00:19:06] Speaker C: But there's lots of complications that of course come from it. So like Iron Extreme. I have postural orthostatic tachycardia syndrome, which is pots. So that's linked. Caused by My Lyme disease, we think, and that causes my heart rate to run extremely fast or extremely slow. So, like right now I'm running an abnormal heart rate. My heart is too fast. It's not unusual for me to run a heart rate of 160 just by standing up. That's sort of how my body responds to things. So yesterday I was at 150 majority of the afternoon. Two days before, my heart rate was 40 all day. [00:19:52] Speaker B: Wow. [00:19:53] Speaker C: So it causes extreme changes and things like that. [00:19:57] Speaker B: How do you control that? Like, how do you. [00:19:59] Speaker C: I'm medicated and I have an ECG machine implanted into my chest. [00:20:06] Speaker B: Okay. [00:20:06] Speaker C: I also have a port on this side of my chest which I get IVs through. When my blood pressure crashes, I need IV fluids to try and regulate it and my veins sort of gave up. So that's why we have the port now. So there's lots of treatment options, but they're quite full on treatment options and it's a, it's a daily thing just to try and manage it. So things like that are not classed as life threatening, but they're life depleting, debilitating. [00:20:41] Speaker B: What is life threatening? Have you petitioned the government? I mean, that's a stupid question. [00:20:46] Speaker C: There was actually a Senate inquiry back in 2016. [00:20:51] Speaker B: Okay. [00:20:52] Speaker C: That acknowledged it, basically found, yes, Lyme disease is an issue. Yes, we need to do something about it. Yes, people are suffering, but nothing has really been done about it since. [00:21:04] Speaker A: Why, why do you, Sorry, why do you think that there's not enough focus on it or not enough who In a medical. And this is a question I'm, I'm not a great fan of a lot of things that happen because somebody decides that this word is not acceptable. And I thought, who gives that person. [00:21:29] Speaker B: Right. [00:21:30] Speaker A: So with something Lyme disease, who gives the ama, who from the AMA says, oh, we don't want to research this. [00:21:41] Speaker C: Well, it's been researched. But I suppose the thing is, it's who you're asking when you're doing the research. Because if you're going to do research into cancer, you're not going to talk to an orthopaedic surgeon, you're going to talk to an oncologist. Right. So with Lyme disease, rather than just talking to the people that don't believe it exists, why are we not talking to the doctors who have researched it and know what they're talking about with it and are doing all these leading treatments like they should be the ones that are being consulted and the experts in the situation where instead we seem to be using people who don't believe it exists as the experts. [00:22:25] Speaker A: What do you think that is? I mean, this is a general question. Why do you think that is? [00:22:30] Speaker C: I honestly don't know. I wish I had a simple answer. The if you ask, the answer you get is Australian ticks don't carry Lyme disease. [00:22:40] Speaker B: I think that's, that's what you were saying before, because 10 years ago, you weren't in danger. You were, you know, you had your symptoms and everything, but it wasn't something that was an emergency. [00:22:55] Speaker C: Yeah. [00:22:55] Speaker B: And then 10 years later, now you're in an emergency. They're like, well, it must be something else, because it wasn't, and they don't know enough of it. I'm not defending doctors because, to be honest, I hope that you do get help and things do get better, But I think.