Adele Gonsalvez, Honours Student, Australasian Wildlife Genomics , Syndey University; Jackie Le, EM Diagnosed, Director at The Erythromelalgia Association and Joshua Griffiths, Senior Wildlife Ecologist
When Jackie Gonsalez was just young, doctors assumed that she was pining for attention when she restlessly tried to rub her feet and describing that she was in constant pain. It wasn’t until she was a teenager that doctors and scientists diagnosed her with Erythromelalgia, also known as ‘Man on Fire Syndrome’. It’s a rare condition, and even rarer for people to be born with it, like Jackie was. But what if this uncommon ailment could be cured with the help of an even less common animal? Dr. Kaylee Byers sits down with Adele Gonzalvez from the University of Sydney on her work to understand the genetic properties of platypus venom. Researchers indicate that their peculiar toxin could put a halt to chronic pain. Meanwhile, producer Sean Holden, puts on rubber waders and sloshes into the boggy waters of Southern Australia to find the notoriously elusive platypus and its venom.
A lifetime of pain, Jackie Gonsalez on having Erythromelalgia
A weird and wonderful platypus with Adele Gonzalvez
On the platypus prowl, Josh Griffith and his team search for platypus and their venom
00:00:05
Dr. Kaylee Byers: Take it from me, crunching numbers in a lab and sifting through mountains of papers can only get you so far.
00:00:12
Josh Griffith: Got another pair of waders if you want some.
00:00:15
Producer Sean: I would love to if you’ve got an extra.
Read Transcript00:00:17
Josh Griffith: What’s your shoe size?
00:00:17
Dr. Kaylee Byers: Sometimes you have to get your hands dirty to seek answers.
00:00:23
Josh Griffith: Let us know if you need the rescue.
00:00:23
Dr. Kaylee Byers: Which is exactly what our producer, Sean Holden, is doing.
00:00:26
Producer Sean: It’s a little boggy here.
00:00:28
Dr. Kaylee Byers: Traversing the back creeks and bogs of Southern Australia.
00:00:31
Producer Sean: Just arrived in Warburton. It’s sort of a small town.
00:00:35
Dr. Kaylee Byers: Why get his feet wet?
00:00:36
Producer Sean: And why am I here? Maybe tucked away in this small little community is the cure for chronic pain.
00:00:46
Dr. Kaylee Byers: Pain. Few things in this world are ever certain, but experiencing pain certainly is.
00:00:54
Producer Sean: All right, just before we hop off, Josh, can you quickly tell me what are we going out to do?
00:00:58
Dr. Kaylee Byers: Yet, hidden under the brush upstream, an elusive critter might be packing the key to make this fact of life a footnote.
00:01:09
Josh Griffith: We’re doing a platypus survey tonight, so we’ve got nets set out.
00:01:11
Producer Sean: All right, we’ll just hop into the river looking for some platypus.
00:01:22
Dr. Kaylee Byers: You are listening to Nice Genes!, a podcast brought to you by Genome British Columbia. I’m your host, Dr. Kaylee Byers, collector and curator of oddball critter stories with a genomics hook. Nice Genes!, here we go. Do you remember the most pain you’ve been in?
00:01:40
Streeter: Physical pain.
00:01:41
Streeter: When I crashed my bicycle.
00:01:43
Streeter: Ski racing, breaking my legs.
00:01:44
Streeter: Oh, I fell off a moped.
00:01:46
Streeter: I broke my ankle.
00:01:48
Streeter: Yeah, rugby is brutal.
00:01:48
Streeter: Yeah, yeah, yeah.
00:01:50
Dr. Kaylee Byers: You probably do. We remember pain. If we’re lucky, it passes, but that’s not always the case.
00:01:57
Streeter: Yes, I broke my back in February, so-
00:01:59
Dr. Kaylee Byers: This February.
00:01:59
Streeter: … recently, yeah.
00:02:03
Dr. Kaylee Byers: Oh my gosh. Wow.
00:02:03
Streeter: Ski accident. That was definitely painful.
00:02:06
Dr. Kaylee Byers: We may assume that a run- in with pain like this is inevitable. Roughly one in five adults experience chronic pain, but today we are asking whether we might be able to relegate this type of pain to our past.
00:02:21
Producer Sean: Step one. Let’s see if we can go find Josh.
00:02:25
Dr. Kaylee Byers: Fascinatingly, the solution may be found in one unique and one of my all- time favorite critters, one that looks cute and cuddly, but is notoriously elusive and feisty with a powerful punch.
00:02:39
Producer Sean: Let’s where go to from here.
00:02:43
Dr. Kaylee Byers: I’m joined by our producer, Sean Holden, who’s going to share his journey to find the paradigmatic platypus.
00:02:50
Producer Sean: Hello, hello.
00:02:51
Dr. Kaylee Byers: Did I say that right?
00:02:52
Producer Sean: Yeah, I think so.
00:02:52
Dr. Kaylee Byers: Paradigmatic?
00:02:53
Producer Sean: I think you said it right.
00:02:54
Dr. Kaylee Byers: Wow. Good. Good for me. Thank you. Thank you so much. Sean, what are we hearing right now?
00:02:59
Producer Sean: Well, that’s me in Warburton, Australia and I’m there to meet some expert trackers of platypus.
00:03:05
Josh Griffith: There you are, man. How you doing?
00:03:07
All: (Conversation)
00:03:07
Dr. Kaylee Byers: That’s Pretty cool. Can you introduce us to the team?
00:03:11
Producer Sean: Yeah. We’ve got Lisa.
00:03:12
Lisa: Hi, I’m Lisa.
00:03:13
Producer Sean: She’s an invertebrate biologist. Then there’s Alex, another conservationist, and I swear he has a sixth sense for the creepy crawlies hiding in the dark.
00:03:23
Alex: It’s one of the wolf spider things.
00:03:25
Producer Sean: Dang, I didn’t even spot this. And lastly, we have senior ecologist, Josh Griffiths.
00:03:29
Josh Griffith: And nice to meet you. Josh.
00:03:31
Producer Sean: The most experienced platypus tracker among us.
00:03:34
Josh Griffith: Asses how the population’s going and collect a few biological samples, some DNA and-
00:03:38
Dr. Kaylee Byers: Neat. Okay, so what’s with the platypus quest?
00:03:43
Producer Sean: Okay, so there are many reasons, but the basic one is platypus’, despite looking like a lovable mistake of nature, have a myriad of abilities. They are mammals, they lay eggs, have a flat tail like a beaver for swimming and burrowing, and are adorned with a handsome bill like a duck, but perhaps one of their more unusual appendages are the spurs that the males of a species possess.
00:04:06
Josh Griffith: Male platypus have, it’s a curved spike-
00:04:09
Lisa: It looks like a claw .
00:04:11
Josh Griffith: On their inside of their rear legs.
00:04:13
Producer Sean: And packed in those spurs is a venom, pretty potent, too.
00:04:16
Josh Griffith: The venom causes massive swelling and excruciating pain, and it lasts for weeks.
00:04:23
Producer Sean: If you have an unfortunate run- in with the business side of their spur, not even morphine can stop the pain.
00:04:28
Josh Griffith: The only way they stop the pain is they’ll put nerve blockers in and basically kill your limb for a period of time.
00:04:37
Producer Sean: But that is exactly why I’m here. Researchers believe that if they can get their hands on enough venom, they could potentially synthesize a cocktail that would help us understand pain and halt it in its tracks.
00:04:51
Dr. Kaylee Byers: Whoa. That’s not news to me. I feel like the past couple of months working on the show together, we’ve been pretty pumped to talk platypus.
00:04:59
Producer Sean: Platypus is out of the bag now.
00:05:01
Dr. Kaylee Byers: Maybe we can quantify this for folks. How does genomics affect how we experience pain?
00:05:09
Producer Sean: It’s actually baked into our DNA. The past few decades of research have shown that many genes affect how we experience pain. Our pain channels might look different from one person to the other, and even our environment plays a role. Studies on twins showed that 50% of how you experience pain is inherited in your genes. We share this experience, but it also varies. Simply put, your genes can make a little bump to the shin feel like a oopsy daisy, how silly of me to a hi, careful. You know what I mean?
00:05:44
Dr. Kaylee Byers: Yeah, yeah. I’ve been there, but okay, we need pain. Life doesn’t come with warning lights, and so pain, it’s sort of the brake light for the future, so you can avoid bumping your shin again.
00:05:57
Producer Sean: Yeah, but I guess there comes a point when the pain becomes too much to handle, so if we’re able to put a stopper on pain, wouldn’t we like to know?
00:06:08
Dr. Kaylee Byers: Yeah, I’m pro knowledge generally, so well, let’s see how this plays out.
00:06:15
Producer Sean: Which is why I shared our platypus tale with someone who’s interested to see if we can put a plug on pain.
00:06:20
I was just like, platypus, like the animal? What are we talking about?
00:06:27
Producer Sean: Kaylee and I spoke with Jackie Gonzalez. Are you experiencing pain right now and where is it on that one to 10 scale?
00:06:35
Jackie Gonzales: Today, yes, I am in pain. I’m at roughly four to a five today on the pain scale, and my hands are actually flaring really badly today, so my hands are bright red.
00:06:48
Dr. Kaylee Byers: Jackie has a rare condition called Erythromelalgia, but it’s more colloquially known as man on fire syndrome.
00:06:55
Jackie Gonzales: Most of the time, I just call it EM for short. I’ve put my hand on a heater, is literally what this feels like, combined with deep muscular aches that you would get when you have the flu. Imagine having a super, super warm hot sock on and then those deep muscular aches.
00:07:13
Dr. Kaylee Byers: Day- to- day living with the condition is a challenge.
00:07:16
Jackie Gonzales: It’s affected every aspect of my life. Hello. I’m at one of my favorite coffee shops and my feet are starting to burn. This pain is constant, so I am going to switch on my fan. I’m in the middle of working and I’m losing all of my concentration because my feet are starting to flare, so I’m going to turn my fan on now so my feet are burning. I have a little gel slash ice freezer that I grab my little ice things for my feet. I’m trying to get to sleep, but that’s not happening because my, pop in the freezer here and grab my little ice pack, try get back to sleep, turn on my fan. I’m right here with my cute doggy that has decided to join me, a bit and I just had to shut everything off, and yeah, pretty much going to get my day started. Good morning, everyone.
00:08:25
Dr. Kaylee Byers: Jackie, can you take us through the journey of finding out that you had Erythromelalgia?
00:08:31
Jackie Gonzales: Yes. Sit down, get comfortable. It’s a little bit of a journey for sure. My mom noticed that I was sitting down a lot and that I was rubbing my feet when I was around six years old and the doctors couldn’t really find anything wrong, and so they were like, “Well, she just wants attention.” My mom was like, “Okay, but I know my daughter. Something’s really, really wrong.” It was just weird symptoms, potential surgeries, treatments. I had a cabinet full of medication growing up as a kid. It was just very defeating going to the doctors every six months. I think I missed most of school. So then, we went to a chiropractor one day when I was around 12 and he looked at my feet and he’s like, “Your feet look a little red.” The chiropractor was like, “Oh, have you heard of something called Mitchell’s disease?” And my mom’s like, “What are you talking about?” and he took a vial of warm water and he put it on my hand, and he’s like, “Do you feel that?”
I said, “Yes”. Then he was like, okay, and then he put it on my foot, and he was like, “Do you feel that?” And I was like, “No. Whoa, what is this?” He gave us all these papers and there’s something called the Erythromelalgia Association. We went and my mom found all the doctors, all the research, everything that was happening and the main people that were diagnosing this was up in Mayo Clinic, up in Rochester. We got a script to go up there to visit all the doctors that I had read all this research about.
When we got up there, it was a week of hell. Being 13 and going up and being poked and prodded, again, I have given so much blood in my life, but I was to the point of if anybody else can not go through all the crap that I went through, yes, I want to help. Look at my symptoms, look at my feet, look at my blood work, whatever needs to happen, and they put you in a human size oven and they see if you can sweat. This will induce a horrible flare up that will last weeks. Once we finished all of the tests that they wanted done, it was concluded that I had primary Erythromelalgia, which means it’s idiopathic and it’s not secondary to any other condition. Hearing that as getting close to my teens and being in high school was really rough.
00:11:12
Producer Sean: Could you share, is there a genetic component for EM in your case?
00:11:15
Jackie Gonzales: In my case, it could potentially be a spontaneous mu mutation, but for many people with Erythromelalgia, the gene that’s mutated for them is the SCN9A gene.
00:11:28
Dr. Kaylee Byers: The SCN9A gene gives our body a very specific blueprint. Those biological instructions produce sodium channels in our nerve cells, which are used to communicate sensations in our brain, including pain.
00:11:43
Jackie Gonzales: The problem is the sodium channel stays open longer than normal and that results in more pain.
00:11:49
Dr. Kaylee Byers: You mentioned the diagnosis in your early teens as being rough. What does it mean for you to have a diagnosis? It was a very mixed feeling because on one hand I was so excited to finally have a name for something that had plagued me my entire life, being told I wasn’t crazy for feeling the things that I was feeling, that was very, it was like a weight was lifted off my shoulders, but on the other hand, it was a chronic condition with no real treatment and no real cure.
00:12:25
Josh Griffith: Yes, I reckon-
00:12:32
Lisa: Can you lift his bag.
00:12:34
Josh Griffith: I’ll take my bum bag.
00:12:35
Dr. Kaylee Byers: So, platypus.
00:12:38
Producer Sean: Josh, the team, and I began by going to five different sites along the creek, infamous platypus hunting grounds. We’re in their territory now. Earlier in the day, the team set up massive nets along waterways, which funnel anything coming up and downstream. Platypus’ are nocturnal hunters, so they paddle out at night looking for tasty bugs to eat and if we’re lucky, we might catch one and grab a vial of that precious, precious venom. All right, Josh, first net check. What did we find? Anything?
00:13:10
Josh Griffith: Lots of leaves and twigs filling up the nets, but no platypus, unfortunately.
00:13:15
Dr. Kaylee Byers: Other than finding the platypus, how did you even find this crew to do this very specific task?
00:13:22
Producer Sean: Oh, it’s just a popular pastime here in Australia.
00:13:25
Dr. Kaylee Byers: I always assume that. I always just assume that this was what Australians did in their free time.
00:13:30
Producer Sean: Well, I first heard about them from a mutual contact. Remember Carolyn Hogg from season two?
00:13:35
Dr. Kaylee Byers: Oh yeah.
00:13:35
Adele Gonsalvez: I cannot work.
00:13:36
Dr. Kaylee Byers: That’s fair.
00:13:37
Producer Sean: Well, she introduced me to a scientist named Adele Gonsalvez.
00:13:41
Adele Gonsalvez: And I’m a PhD student with the Australasian Wildlife Genomics Group at the University of Sydney in Australia.
00:13:48
Josh Griffith: She’s taken a special interest in our slippery venomous critter.
00:13:53
Adele Gonsalvez: The first specimen around 1900 was sent to England and they thought it was a hoax. They thought someone had sewed a duck’s beak onto some other animal and didn’t believe it.
00:14:06
Dr. Kaylee Byers: Very funny. It’s like, oh, someone took a Marmot and then they put a duck-
00:14:09
Adele Gonsalvez: You’re like, taxidermy hoax.
00:14:11
Dr. Kaylee Byers: … a duck beak on it.
00:14:11
Adele Gonsalvez: This isn’t a real animal. How could it possibly be? It’s so strange.
00:14:18
Dr. Kaylee Byers: How did you first become interested in the platypus?
00:14:23
Adele Gonsalvez: In high school everyone does work experience and I managed to get work experience at a zoo that’s in Sydney, and I was put in the Australian mammal division. I got to spend a day working with them and kind of just got fascinated with how strange they are. There’s genuinely not a feature that they have that’s not strange. They’re egg laying mammals, for one. They don’t have traditional stomachs, so they have a little pouch that absorbs nutrients, but they don’t actually have any digestive function in it.
00:14:54
Dr. Kaylee Byers: Oh, wild.
00:14:55
Adele Gonsalvez: They don’t have adult teeth. They use electroreception, like sharks, to find their prey. They’re bioflorescent, so under a UV light, their fur is blue- green, which is just honestly at this point, what are you doing?
00:15:10
Dr. Kaylee Byers: It’s a pretty weird animal, including its venom.
00:15:13
Adele Gonsalvez: Yeah, so that is my favorite fun fact. A lot of the natural world has proteins and components that have been tailored for particular purposes that we just don’t know about yet. If it helps with the pain and affects the pain in a particular way in an animal, there is a high chance or a possible chance that it could do something for pain in humans as well.
00:15:37
Dr. Kaylee Byers: How can we flip the platypus painful brew into a powerful medicine? You are listening to Nice Genes!, a podcast all about the fascinating world of genomics and the evolving science behind it, brought to you by Genome British Columbia. I’m Dr. Kaylee Byers, your host, and we want to get more people to listen to the genomic stories that are shaping our world. If you like Nice Genes!, hit follow on Apple podcasts or wherever you get your shows. Spur on your friends by sharing this episode.
00:16:15
Producer Sean: All right. What the?
00:16:21
Josh Griffith: It’s covered in bleaches or something?
00:16:24
Producer Sean: Yeah, they’re-
00:16:24
Josh Griffith: Disgusting.
00:16:26
Dr. Kaylee Byers: Adele Gonsalvez has a stake in the success of Josh and Sean’s trip.
00:16:30
Producer Sean: Looks like we caught ourselves a crayfish platypus. How about do you try and extract the venom from a platypus?
00:16:39
Dr. Kaylee Byers: She wants to unlock the genomic secrets behind the peculiarity of platypus venom.
00:16:42
Josh Griffith: I’ve tried a few different ways without a lot of success-
00:16:42
Dr. Kaylee Byers: However,-
00:16:42
Josh Griffith: … breeding season-
00:16:42
Dr. Kaylee Byers: Platypus’ are notoriously elusive.
00:16:49
Josh Griffith: So, the males are getting quite aggressive and they produce a lot of venom, so sometimes when you catch them, you actually just kind of-
00:16:53
Dr. Kaylee Byers: And then, to milk their venom.
00:16:55
Josh Griffith: Otherwise, I can try to sort of massage their venom gland and see if it’ll help them exude a little bit, but I haven’t had a lot of success in that.
00:17:04
Dr. Kaylee Byers: Let’s just say, it’s harder than milking a cow.
00:17:07
Josh Griffith: This is one of the more annoying aspects of the job.
00:17:11
Adele Gonsalvez: Males use it against other male platypus as opposed to a traditional venom functionality, which is usually predation or defense, which makes their venom system super interesting and kind of a rare reason behind why they have this trait. Luckily for us, it’s never killed a person, and for some of the symptoms are like excruciating pain, site numbness, lots of sensitivity to pain and pressure, loss of mobility. I think a man who once got envenomated didn’t have proper mobility for months. So, very weird symptoms for a very weird animal.
00:17:52
Producer Sean: All right. The trusty crew is off.
00:17:53
Josh Griffith: Yeah. Okay.
00:17:55
Producer Sean: Want to grab it?
00:17:55
Josh Griffith: How many fingers have you got at the moment?
00:17:58
Producer Sean: The right amount.
00:18:00
Dr. Kaylee Byers: If they can catch one of these real world Pokemon, Adele might be able to sequence the molecules and particles that make up their venom.
00:18:08
Adele Gonsalvez: One of our main reasons for looking into platypus venom is to figure out what each of these components actually do in the venom, because that has never properly been attributed, so we’ve never been able to say protein A causes the pain, protein B causes the numbness, et cetera, but we’re actually part of a broader research council in Australia, which is focused on discovering cool stuff in nature, figuring out what it does, and then seeing how we can apply that to challenges that we are facing in the world right now.
00:18:42
Dr. Kaylee Byers: Unlike Sean’s and Josh’s job, the real catch is that the process to do this work, well, it takes a while.
00:18:50
Adele Gonsalvez: So it is a long time, stale kind of thing.
00:18:53
Dr. Kaylee Byers: Well, and then I wonder, but then do you have to somehow convert this into a synthetic process because, so maybe there’s something really promising that comes out of the platypus, and so do we really want to be out there milking platypus venom for pharmaceuticals? How might you approach that sort of a dilemma, thinking about that?
00:19:14
Adele Gonsalvez: Oh yeah, it definitely becomes synthetic. Getting one venom sample of even 50 microliters is a year long process and incredibly, incredibly difficult. Luckily, chemistry has magical ways that’s able to synthetically produce the protein and manufacture it synthetically, and then that would be developed into a pharmaceutical.
00:19:34
Dr. Kaylee Byers: I’m sorry, can you tell me about the year long process? How is it a year to get that amount of venom from a platypus?
00:19:41
Adele Gonsalvez: Well, to be fair, we actually haven’t even got the venom yet.
00:19:43
Dr. Kaylee Byers: Oh, wow.
00:19:46
Adele Gonsalvez: To get platypus venom is a science that has not been perfected by any means. A couple methods have been tried to get platypus venom, including milking like snake venom or aspirating directly from the duct with mixed success. There isn’t really one perfect way to do it. We have a lot of collaborators who are trying to get us a sample of platypus venom. Anyone who works with wildlife will soon realize that sample size becomes whatever I can get my hands on, and it’s very opportunistic. It’s basically, if a platypus happens to die in the wild or in a zoo facility, we have ethics to try to get that venom gland sampled immediately, but we’re not going to go in and try to sample a gland of a living animal to try to preserve the species and try not to affect them too much. There is a reason why hundreds of people haven’t gone out and done this, and it comes down to the ability to get the samples.
00:20:53
Jackie Gonzales: Hi everyone, it’s me. I am having a flare up and it looks like a bad sunburn and it goes halfway up my leg.
00:21:02
Dr. Kaylee Byers: For Jackie, platypus venom would be just the tip of the medicinal iceberg.
00:21:07
Jackie Gonzales: I’ve been on every pain medication you could ever think of. I’ve had to go through so much, but every new treatment that comes out, I am very hopeful that this could be the one thing that could help a majority of us that are just in so much pain, debilitating pain, every day.
00:21:29
Dr. Kaylee Byers: Sean, what’s the result?
00:21:31
Producer Sean: Well, tried, we did. What did we catch? What’s the first catch, Josh?
00:21:36
Josh Griffith: Unfortunately not a platypus, but we’ve got a net-
00:21:38
Producer Sean: All right, that’s site number three. I’m just catching up with you. Net number four. Net number five. Is this the last net for the rounds? What’s the status of platypus right now? They’re not endangered, of course.
00:21:52
Josh Griffith: Yeah, they should be.
00:21:54
Producer Sean: They should be? What are your thoughts?
00:21:57
Josh Griffith: All the evidence we’ve got.
00:21:58
Producer Sean: The first round’s a wash. Round two.
00:22:01
Josh Griffith: The problem is that the evidence is fairly sparse.
00:22:07
Producer Sean: All right, so Josh can you quickly tell me what we’re doing for this first net round two?
00:22:13
Josh Griffith: We’ve turned up and basically, the nets have collapsed with all of the leaves and-
00:22:18
Producer Sean: By the end of the night the crew had to pull out three of the five nets.
00:22:22
Josh Griffith: Essentially, we’re just going to pack them up and take them out for the night.
00:22:26
Producer Sean: Heavy wind blew tons of branches and leaves down, which tangled into the nets, making them a would be platypus death trap.
00:22:33
Dr. Kaylee Byers: Why? Why would that happen?
00:22:34
Producer Sean: Okay, so if a platypus or any critter for that matter gets trapped in one and then the net went downstream, it would pull them down with it.
00:22:42
Josh Griffith: I guess the animal welfare side is the top priority here.
00:22:47
Producer Sean: After the three nets, how are you feeling right now?
00:22:52
Josh Griffith: A little depressed, I’ve got to say.
00:22:54
Producer Sean: I guess the bear’s repeating. We’re on round two, net four. Net five are the last net for me. Any luck, Josh?
00:23:05
Josh Griffith: No, it’s a very quiet night on the platypus front.
00:23:10
Producer Sean: All right. It was a good effort, but the point goes to the platypus. Our merry band was defeated. No platypus. Just driving off. I’m heading home, but they’ve got another check or two. They’re down three nets, two left. It’s not looking great. Looks like it’ll take some more time to snag a platypus and it’s venom for Adele.
00:23:41
Dr. Kaylee Byers: Are you hopeful that looking into the venom we’ll come up with some promising solutions to things like pain, alternative to current pharmaceuticals, anything like that?
00:23:52
Adele Gonsalvez: Yeah, with any discovery project, there’s definitely the possibility for that. I know we have collaborators in Queensland who have found a protein in the funnel web spider venom, and that’s currently getting developed into something to help stroke victims. Because these venoms particularly act on pain pathways to affect the victim of the envenomation, there is a high likelihood that it’s going to have some ability to be modified into something that can be used as a therapeutic, but then again, that is a very long process to go from the raw material, from an animal figuring out what it does and then to possibly applying it.
00:24:41
Jackie Gonzales: Hello, I’m about to get into the meditation part of my day because I’m really looking to just find balance with my pain.
00:24:50
Dr. Kaylee Byers: Hearing from Jackie,-
00:24:51
Jackie Gonzales: And a big part of-
00:24:52
Dr. Kaylee Byers: It’s been a long journey. There’s a person behind that diagnosis with hopes and dreams and they really just want to live a good life. Are you going to get better?
00:25:03
Jackie Gonzales: I get asked that question all the time. I want to say yes because I want the other person I’m speaking with to be happy and you form this mask to be around people, but at the same time, the reality of it is that many people with chronic conditions do not get better. They just do the best that they can on a day- to- day basis. Perfectly fine. I’m going to get started now.
00:25:39
Dr. Kaylee Byers: But even the longest and platypus- less nights are speckled with dots of light.
00:25:46
Jackie Gonzales: I will say, going through all of this, it’s truly a feeling that I don’t want a lot of people to have. Beth is the president of the Erythromelalgia Association, and I sit on the board of directors and I’m the youngest member. Beth and I met up about two years ago and we went into our bags, we pulled out our fans and we looked at each other, and we just laughed so hard because for the first time ever, I did not have to explain to somebody why I’m pulling a fan out of my purse to put on my feet, and she didn’t have to explain either, but it was just one of those moments of just belonging and finding a community, finding people that have been in your shoes has changed my life. It has truly changed my life and it’s helped me feel just connected to people and to be able to share my day to day, to be able to understand what their journey was, that what works for one person may not work for another, but there could be that one thing that I share that helps somebody, and now they’re in less pain.
(Singing)
00:28:12
Dr. Kaylee Byers: Our guests for today, were Adele Gonzalvez, with the Australasian Wildlife Genomics Group and the University of Sydney, Jackie Gonzalez with the Erythromelalgia Myalgia Association, and Senior Wildlife Ecologist, Josh Griffiths with Caesar Australia. Special thanks to Alex Litvinenko and Lisa Kirkland, as well as the many people who lent their voices to today’s episode.
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Platypus might be an unsung mascot of Australia, but what happens when assumptions made by settlers set an iconic and loved species on the path to extinction?
00:29:22
John Bradley Williams: We have an estimated one to 3% left of our Garry Oak ecosystem. When the colonists got here, they already had nice policies and procedures set up to either destroy or control those ecosystems.
00:29:42
Dr. Kaylee Byers: Join us next time when we take a walk through towering groves of trees to ask big questions about reconciliation and land stewardship. Thanks for listening. Stay tuned for the next episode we platypush your way.