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Episode 89: Janee Chandler - Ebstein's Anomaly
21 Plays3 days ago
Janee lives with Ebstein's Anomaly, a rare congenital heart defect that has shaped every stage of her life. Diagnosed at birth and undergoing open-heart surgery at just seven years old, Janee shares the physical realities of living with arrhythmias, repeated hospital admissions, and the possibility of needing a heart transplant in the future. Yet throughout our conversation, what stands out most is not the medical complexity, but her remarkable resilience and positivity.
Janee reflects openly on growing up feeling different, hiding her surgical scar, and believing she had to keep her condition to herself. She explains how finding the congenital heart disease (CHD) community transformed her self-confidence, helping her realise she was not alone. That journey eventually inspired her to create The Heart Connection, a non-profit supporting adults living with congenital heart disease through practical care packages and a growing community of understanding.
This episode explores identity, belonging, fear, hope, and the extraordinary impact of finding people who truly understand your experience. Janee's warmth, honesty and determination shine throughout, making this an inspiring conversation about turning personal challenges into support for others.
The song that Janee chose is I Lived by OneRepublic.
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Transcript
Introduction to 'On One Condition' Podcast
00:00:00
Speaker
Hi, I'm Sylvain Bertelot and you're listening to On One Condition, a podcast to raise awareness about health conditions by listening to people who live them every day.
Introducing Janie Chandler and Her Story
00:00:10
Speaker
My guest today is Janie Chandler and we're going to talk about Epstein Anomaly.
00:00:17
Speaker
Hi Janie, how are you doing? Hello, I'm doing good. How are you? I'm doing great, thank you. I'm very glad that you're joining me on the podcast today.
00:00:29
Speaker
As you know, I love starting with a song. So which song did you choose and why? Yeah, well, thank you so much for having me. The song that I chose is i Lived by One Republic.
00:00:41
Speaker
I chose this song because it reminds me that even though I have a chronic heart defect and everything that comes with it, that I still deserve to live my life to the fullest that it can be and whatever that looks like for me.
00:00:55
Speaker
I love it because it also reminds me there's a part in there that says something about fear and peace and happiness. And it just reminds me that like fear and happiness can like coincide and can, you know, happen at the same time.
00:01:11
Speaker
And it doesn't, you know, make your life any less meaningful. Anyway, anytime I listen to that song, it just really, you know, brings up those those emotions and and those reminders for me.
00:01:23
Speaker
Nice. like it. I love starting with a song because there's always a story. And no matter what the story is, i like that music makes you feel things and sometimes takes you somewhere else as well.
00:01:40
Speaker
Absolutely.
What is Epstein Anomaly?
00:01:42
Speaker
So before I discovered you, I think on Instagram, I didn't know anything about Epstein anomaly. I'm pretty sure a lot of our listeners won't either. So could you tell us a bit more about what it is and then we'll talk a bit more about how it's affecting you and how you discovered it yourself?
00:02:02
Speaker
Yeah, absolutely. So Epstein's anomaly is a congenital heart defect. um Congenital just means that you're born with it. Specifically, Epstein's is where the tricuspid valve is malformed. So it's lower down into your right ventricle. And then sometimes also the leaflets are deformed.
00:02:24
Speaker
Epstein's is very much a spectrum. So um there's children that have to have surgeries when they're like babies because it's so severe. I know some people that weren't even diagnosed until adulthood. But they had it all along, but that it was just so mild that, you know, they didn't have any symptoms.
00:02:42
Speaker
I was one that was diagnosed at birth, but I did. i was able to wait until I was seven to have open heart surgery to replace that valve. Sometimes you're able to fix it, but mine was just too far damaged. And so I did have to completely replace it.
00:02:59
Speaker
Epstein's, like I said, is a congenital heart defect. Congenital heart defects or CHDs are just an umbrella term. um There's a lot of different CHDs. Epstein's is one of the more rare ones. and We actually account for only 1% of all CHDs.
00:03:16
Speaker
There's about one in every 200,000 live births have Epstein's anomaly. So and it's pretty rare. And I'm sure we'll talk about the wider CHD community as well later on.
00:03:30
Speaker
So you were diagnosed at birth.
Impact of Heart Condition on Childhood
00:03:33
Speaker
So for you, that's something that's been with you your whole life. Has it at all impacted how you grew up?
00:03:43
Speaker
How was it as a child? I mean, it it definitely affected me growing up. You know, I had surgery when I was seven. And then two weeks after that, I developed arrhythmias.
00:03:55
Speaker
So not only did I have that huge scar down my chest that as a kid, I did try to hide. And, you know, i was not it was not something I was proud of. You know, i didn't want to be viewed as as different as all kids do.
00:04:08
Speaker
And I just somehow, as a kid, we know that, you know, if you have something like that, you're going to be viewed as different, unfortunately. That along with having the arrhythmias, you know, I took medications. So just sending everything like that, you know, definitely impacted my view of myself. And then also like how I wanted people to view me. I didn't tell anyone that I had my heart defect.
00:04:35
Speaker
I think like maybe my closest friends, you know, if I had like sleepovers or something, obviously they would have to know and their parents would have to know. But other than that, I i didn't tell anyone.
00:04:46
Speaker
And so it definitely affected me socially. it also affected me mentally, just, you know, my self esteem was very low, just because, you know, I knew that I was different. I knew I had the scar.
00:04:56
Speaker
Definitely socially, you know, I feel like it affected me in that way. We'll come back to that, I think. but The open heart surgery, ah can't imagine how you approached that as a seven-year-old.
00:05:10
Speaker
Do you remember how how you felt and were you conscious of how critical it was? You know, i think about that too, as an adult now, I don't think I realized at the time, like how intense it was and how scary it it could have been.
00:05:29
Speaker
Luckily, like my parents, specifically my mom, and she always taught me that, you know, I can do anything that I set my mind to, despite having this heart defect.
00:05:39
Speaker
And I think just having that like positive energy, like she was always, you know, saying, it's gonna be okay, and you're so strong and, and all that. And you as a kid, you believe that, right? Like, it's your mom, and she's telling you that you're brave. and I was lucky enough that I had, you know, my mom there to help me through that.
00:05:56
Speaker
Because i think about it, I'm like, i don't i don't think realized, like, how intense that was. I think I just, you know, I knew that I had to have surgery. um You know, I knew that I was going to be away from from school and from my friends.
00:06:11
Speaker
You know, I know that was probably scary. But as far as like the surgery in itself, I don't think I realized how huge that was going to be. You know, how ah that was such a monumental moment in my life. Yeah.
00:06:25
Speaker
And that's what led to the arrhythmias? okay Yes. So because of the scar tissue that formed, because they you know had to go into my heart to replace the valve, because of the scar tissue, that's what led to the arrhythmias.
00:06:42
Speaker
Okay. Apart from medication, there's nothing that can be done about that? So we've tried ablasions, which is basically burning away that scar tissue.
00:06:53
Speaker
Over time, the scar tissue kind of reappears because, you know, my heart is is continually to working, but also like kind of getting worse slowly.
00:07:05
Speaker
And so the scar tissue is kind of going to come back, essentially. I've had multiple ablations throughout my life. um a couple of them were successful. The latest one I've had wasn't, he wasn't able to get all of the scar tissue.
00:07:20
Speaker
But apart from ablations, medicine is really the only thing that we can do to you know, try to at least keep them at bay for as long as we can. Okay. How do they do the ablations?
00:07:32
Speaker
They do it transcatheter. So they go up either through the veins in my groin or also in my neck. And they just go in with a utensil and they are able to, they use heat, obviously, to burn away that scar tissue.
00:07:48
Speaker
Wow. that That sounds scary in itself. Are you asleep when they
Managing Arrhythmias and Surgeries
00:07:54
Speaker
do that? Funny enough, so most of my ablations have been at a children's hospital. And even though I'm an adult now, I'm still able to go to that children's hospital because my adult cardiologist is there. And so in the in the pediatric world, every child pediatric.
00:08:12
Speaker
put to sleep when that is going on. But in the adult world, if I were to be at an adult hospital, most patients are actually awake during that procedure. It's just interesting that I've i've always been asleep during it. Yeah.
00:08:25
Speaker
So I bet you want to stay at that hospital as much as you can. Yes, yes. Wow. And so going back to growing up, did it stop you from doing anything like, for example, sports or things like that?
Exercise and CHD: What Changed?
00:08:42
Speaker
Yeah, and actually, it's an interesting conversation that is actually reappearing in the CHD world. So when I was growing up, all of my childhood, I was always told that I could not do any sports, specifically contact sports. But with my arrhythmias, they're like, yeah, don't do any sports.
00:09:01
Speaker
So now the conversations are happening where actually it's coming out that exercise is good for us and that we still need to move our bodies, you know, in some way. And so now a lot of the patients are now being told to exercise.
00:09:16
Speaker
But us that have always been told not to, you know, it's that weird thing where, you know, you were told one thing and now you're being told something else. So it's kind of scary to exercise. Get your heart rate up because what if something happens or, you know, that triggers an arrhythmia or anything. But so, yes, I was always told no sports.
00:09:35
Speaker
I even in my last couple years of high school, i wasn't even having physical education class. Because, you know, they wanted to to make sure that I wasn't, you know, triggering those arrhythmias. So, but times are changing now, you know, i do try to, you know get some kind of exercise in. Obviously, I'm not a runner or anything, but, you know, I like to take walks and I like to swim, kayak, stuff like that. Kind of those low impact.
00:10:02
Speaker
Yeah. Yeah. What's the risk with the arrhythmias? You said that you're you're taking medication, but that it sounds like you're still at risk of arrhythmias. So do you know what can lead to them? And what happens when you have arrhythmias?
00:10:22
Speaker
Yeah. So interestingly enough, ah most of my arrhythmias have happened when I have not been exerting any energy. i've I've actually been like sitting down at dinner one time and I just started having arrhythmia.
00:10:35
Speaker
The risk with the medication is that you can break through the medication. I'm now at like a really high dose of the one that I'm on because I keep breaking through. and so they just keep increasing the dose.
00:10:48
Speaker
But when I have an arrhythmia, I used to pass out, but now I don't. I just get like really dizzy, lightheaded. And then it's almost just like in an instant, like I can feel it.
00:11:01
Speaker
You can sometimes actually even see it like through my chest, like my heart pounding super fast. My type arrhythmias are called atrial flutters. So it's basically where the atria is not in sync with the ventricle and it just literally flutters. It just kind of palpitates just very quickly.
00:11:19
Speaker
So my arrhythmia is I can get up to like over 200 beats per minute and there's nothing that I can do to get them get it back down.
00:11:31
Speaker
So I have to go, i do have to go to the ER and they have to cardiovert me. So basically like shock my heart into a, um ah back to a normal rhythm. So far it's only taken once, you know, one shock and then, you know, I'm good. But, you know, there are other types of arrhythmias that you can do certain strategies.
00:11:51
Speaker
dunking your face in like cold water or like taking an extra dose of medication but unfortunately mine is just super tricky and we just have to you know shock it and you say that with a smile for for listeners who can't see us i'm shocked by hearing what you say and you say that with a smile what does it feel when they shock your heart Usually they do give me some sort of medication to, you know, kind of not know what's going on. But one time there was an incident where I had really low blood pressure.
00:12:28
Speaker
And so they're like, I just don't feel safe, like giving you any, any type of medication because your blood pressure is so low. So I was awake during that one. and I mean, it doesn't feel good, but you know, it was just literally a second where, you know, it shocks and, your body just kind of like jolts, you know, and then, but then I feel better afterwards, because my heart's back to a normal rhythm.
00:12:53
Speaker
But yeah, it is interesting. i I, have to remember that when I tell people about my experiences with my heart, that like, this isn't normal. And like, you know, people don't typically go through this.
00:13:05
Speaker
It's something interesting that I have to, you know, think about, especially with like my like fiance, for example, like the first time he took me to the hospital when I had an arrhythmia. And, you know, I was just cool, calm, collective, like this is, I'm i'm used to this, right? Like this is i don't want to say it's my norm. But, you know, this is not taboo for me.
00:13:25
Speaker
And so it was interesting to see it kind of through his eyes, like ah an outsider looking in of like, oh, my gosh, like he was very freaked out. And he was scared and you know, all this stuff. And,
00:13:36
Speaker
So it is very interesting how, you know, when you grow up with something, it's just part of your life. And yeah you don't think anything of it until you see it through someone else's eyes. And you're like, oh, right. This isn't everyone's experience.
00:13:51
Speaker
Yeah. Yeah. Yeah. And is it something that you have to, when you have an arrhythmia, do you have to rush to the hospital? Is it a ah time sensitive operation?
00:14:02
Speaker
Yes. So they do prefer that I, you know, get to the hospital as quickly as possible, especially when it gets up to you know, the 200s and all that. And eventually, like I start feeling it too. I mean, you know, within the next 30 minutes to an hour, like my body just feels super tired.
00:14:20
Speaker
You know, it's almost like you just ran a marathon, but like you your heart can't slow down. Yes, I do. i do get to the hospital as quick as I can. Yeah. I want to go back to something you said when you were growing up, you you wanted to hide your scar, not talk about your heart defect and try to be as normal as everyone else.
00:14:46
Speaker
What was the moment when you decided that you didn't need to hide that anymore? Hmm, it's a good question.
Importance of Community and Support
00:14:56
Speaker
and actually just happened, I would say within the last like five years.
00:15:00
Speaker
I think my biggest thing was finding other people that have gone through the same or similar situations that I have. Growing up in most of my 20s, actually, i never met anyone else with a CHD of any kind, not even just Epstein's, but any kind of CHD.
00:15:20
Speaker
And so I think that really led to that feeling of, you know, feeling alone and feeling like I'm the only one having to deal with this. And though finding that community, finding people that, you know, can say me too when I'm explaining a story or, you know, can understand, you know, what I've been through or have similar stories of their own. That was very healing for me. And that was something that directed me towards these new feelings of, you know, feeling proud of, you know, my scar and and and proud of the strength that it took me, you know, to get through everything that I have. And just feeling less alone, you know, just feeling like, okay, I'm i'm not the only one, like there's other people that truly understand what I'm going through, and the emotional and mental, you know, side of things as well.
00:16:10
Speaker
Yeah, yeah. I find it interesting like why we have that need to find people similar to us, why it makes us feel better. I'm not judging here. I'm not saying that it's not a good thing, but because you've been through that process, do you have a ah feel for why it's good to find people who have something similar to you from a physical point of view?
00:16:41
Speaker
Yeah, I, from my experience, I think just that, you know, as humans, we very much, I think, thrive off of other humans.
00:16:54
Speaker
I mean, we can even see, you know, when you are isolated, you know, what that can do to, you know, your psyche and and your mental health. And so although i've I've always been surrounded by people, I've had friends and families, I've that I know love me and care about me. But it's a different kind of loneliness when you're surrounded by people and yet no one truly understands like what you're going through or what you've been through.
00:17:21
Speaker
It was hard for me to talk to friends and family about what I was going through when they didn't really know what to say, you know. they just kind of had that pity look in their eyes or, you know, they just, you know, would say, oh, I'm sorry. And and it's like, that's not what I'm looking for. you know, like I need someone to relate and and to say, oh, yeah, like I know what you're talking about. And so when I was when I found that in other people with CHD, it was just a different kind of feeling and it was a different connection.
00:17:56
Speaker
So like my connection with some of my CHD friends is like a different connection than just, you know, my friends from work or whatnot. And not one is greater than the other, but it's just different. It's just a different connection.
00:18:09
Speaker
And so I think that... Yes, you can be surrounded by people, but until you meet even just one other person that can relate to you on that different level, i think you'll, you know, you'll definitely see the difference um and and how you're feeling and, you know, how you feel about yourself, your hope for the future and like seeing other people that, you know, have have gone through things that maybe you'll have to go through one day.
00:18:36
Speaker
in their strength right as kind of gives you that hope and that drive to like keep going and you know persevere through what you're gonna have to go through yeah so you found that community and you decided to take ah an active role in that community can you tell us more about that Yeah, for sure.
The Heart Connection Nonprofit
00:19:00
Speaker
So I found community through different organizations. And I noticed that a lot of the CHD organizations or nonprofits were very much guided towards children.
00:19:16
Speaker
and the children who have CHD, which is great. We also need more of those. But I just noticed that once you know those children became adults, there was not many avenues or many organizations that they could connect with.
00:19:29
Speaker
And so specifically as adults. And so um I created my own nonprofit called The Heart Connection. We are specifically for adults with CHD.
00:19:41
Speaker
We send out care packages to those adults who are in the hospital. Our motto is to help adults with CHD feel less alone. And so it's just another way for us to be able to connect with those adults with CHD and then also just to remind them that like they're not alone and that they are seen and they are thought about.
00:20:06
Speaker
Having these bags go out to them is just another way for you know me to to kind of pass on the feeling that I got when I found my community. Being that, you know those who find the heart connection are able to find their own community and not feel so alone in this in this crazy world. Yeah, yeah. That's very nice.
00:20:27
Speaker
What do those care packages enc include? We include a range of items. anything from oral health, lip care, lotion, journals, coloring books, sanitizers, pens. So anything, you know, I thought about, you know, sometimes when, and this has actually happened to me before, where I was in my car and I ended up having an arrhythmia. And so I couldn't just stop at home and grab a bag and go to the hospital. You know, I had to go straight there.
00:20:59
Speaker
So, you know, the oral care, the lotion, the hand sanitizer, that's just those little things that you that you need just like in a pinch that, you know, you may have forgotten or you may not have been able to grab from home.
00:21:11
Speaker
And then, you know, we have journals, pens, pencils, highlighters. coloring books, just something to pass the time because I know in the hospital, it's a lot of like just waiting and observing and they're just watching, you know, so giving people just kind of something to do because that's something also that I always forget all the time when I'm in the hospital.
00:21:31
Speaker
We also have bathing wipes. So sometimes, especially like after surgery, or even during observation, sometimes you're not able to bathe because you're hooked up to all the monitors and all that.
00:21:44
Speaker
And so um including those bathing wipes was important to, you know, ensure that, you know, when you when you feel your best, you know, you kind of feel a little bit better and Socks, also grippy socks. So that way, you know, we are able to still walk around if you're able to, you know, but walk around safely. Nice. That's that's so nice. It's all practical things. Yes.
00:22:10
Speaker
I guess only someone who's gone through it can actually relate to that and and know exactly what you need. How do you know when people need it?
00:22:22
Speaker
Yeah, so a couple ways. I've started to connect with hospitals. I've already connected with at least two hospitals. And so I give them a range of bags and then they give it to any adult with CHD who is admitted. So that's one way. And then you can also ask for it individually. So on my website, there is a tab where you can submit a request and you can do it ahead of time. So that way you have it at the date of your admission into the hospital.
00:22:54
Speaker
That's just another way that you're able to request it. Nice. How else do you connect with people with CHD? So I also have a Instagram page specifically for my CHD following.
00:23:09
Speaker
So I'm able to connect on there. i share personal heart related content. I also share educational content and then also about the heart connection, any information about the heart connection there as well. So I've actually met a couple of really good friends from that page. So it's been really special to do that.
00:23:29
Speaker
Do you get to meet people in person as well? I haven't yet from the page specifically. I haven't yet, but I've been close a couple times.
00:23:40
Speaker
And then off the page, I have a ah little CHD group that we meet once a month. And so I'm able to meet kind of people locally that have CHD.
00:23:52
Speaker
Is there anything else you want to do with the art connection? Yeah, you know, I've thought about this. I do want to eventually grow it. i think it'd be really amazing to have meetups, some kind of meetup.
00:24:08
Speaker
But I want to, you know, include a wider range than where I just live. So that's going to be like a big dream one day. I'd love to to get it to the point where we're able to connect, hopefully connect in person. But even if it's, you know, on a video chat or something, that would be great, too.
00:24:26
Speaker
Yeah, nice. It sounds like it all comes from the heart, and excuse the pun, but it it does. it It sounds amazing, so practical and very kind. So, yeah, that's very nice.
00:24:42
Speaker
Going back to Epstein's Anomalyche. Does it have any impact on you as you will grow
Future Health Challenges and Outlook
00:24:54
Speaker
older? Do you know if there's anything you need to be careful with, for example?
00:25:00
Speaker
Yeah, so interestingly enough, there are actually more adults now than children with CHD for the first time in history. The adult CHD world is really kind of new Even the doctors, every time I see my doctor, I feel like there's something new that he's letting me know.
00:25:17
Speaker
So even the doctors are learning a lot. So as far as aging, um you know, there's not much information. i have been talked about with my doctor about the possibility of a heart transplant.
00:25:30
Speaker
that might be in my future. And so I'm kind of just preparing for that mentally as best as I can. Obviously now, you know, I can i can eat healthy. I, you know, see my doctors, PCP, all that, just make sure everything else is healthy.
00:25:45
Speaker
But yeah, that's kind of what my future currently looks like, unless there's, you know, some kind of new research that comes out. But that's kind of where it's headed. And do you know why you would need a heart transplant?
00:25:59
Speaker
Yeah, so because of the way that my heart, the valve is placed, it is placed lower down in my right ventricle. So because of that, over time, that area, the right ventricle has had to work over time. And so eventually, you know, how I've always been explained, it's it's kind of like a rubber band where, um you know, you can stretch it and stretch it and stretch it, but eventually it'll never go back to that original size. Mm-hmm.
00:26:27
Speaker
And so now my ventricle is very loose, I guess you could say. um It's not like that strong heart muscle that it once was. Eventually, you know, it's going to get to the point where it's not working efficiently enough to pump the blood, you know, through the heart and to the rest of the body. That would be the the need for a transplant. Because, you know, the heart muscle, it's it's not something that can be repaired. That would be the reason for the transplant.
00:26:57
Speaker
So it sounds like you're very closely monitored still. Yes. Yeah. So every four years I get a cardiac MRI and in there you can see, so an average person's right ventricle, the ejection fraction is about 50%. Mine is at 24% currently.
00:27:15
Speaker
mine is at twenty four percent currently But that has been stable the past two ct MRIs. That's a good thing. But that is something that we, you know, monitor.
00:27:27
Speaker
And then, of course, you know, my symptoms, right? So if I start swelling or if I start keeping fluid on my body, that's going to be a sign more fatigue. So I'll run out of breath easily. I'll, you know, won't be able to be as as active as I am.
00:27:43
Speaker
And so those like little symptoms is something that I'll see first, right before we ever see that test. Yeah. Have you looked into the heart transplant and what it means in terms of waiting list and so on?
00:28:00
Speaker
Yeah, I do have a couple people that I have. Well, I know someone that's gone through a heart transplant. And then I have a friend here locally that she's actually on the list. And so she's going through that process. And so I've been able to see the before, during, and kind of after, which has been really special that I've been able to witness that. But, you know, it is it's a lot of prep. It's a lot of preparation. It's not a quick process. And even when you're on the list, you know, you can be waiting months.
00:28:31
Speaker
So it is something that, you know, I'm actually very fortunate that I know kind of early on that that may be a reality for me. you know, I'm trying now to kind of do what I can to kind of prepare for that. So such as, you know, the staying healthy, i'm still moving my body, i'm exercising in some way, thinking about future as far as like working and, you know, trying to work as as long as I can.
00:28:58
Speaker
Yeah. and And I've definitely learned a lot. You know, there's food restrictions after transplant that, you know, you would never know until you go through it. So being able to learn all of that has been really, i think, interesting, but also very special that, you know, I kind of already have a visualization of like what that would look like before you know having to walk through that but myself yeah i guess mentally it's good for yourself to be able to know what to expect and hear it from someone else that must be so useful because yeah you talked about fear early on and yeah i guess that reduces the fear effect quite a lot and knowing what what can happen
00:29:42
Speaker
Yeah, yeah, for sure. And, and even like when when my doctor first talked to me about it, I was like, No, but like I was and I was like, No, this isn't gonna happen. It's not, you know, not gonna be me all that. But it is, you know, it's just based on fear, you know, the the fear of the unknown, the fear of like, what does that even mean? And, you know, sometimes all you hear is like horror stories from, you know, transplant.
00:30:05
Speaker
So to be able to see like the success and like the the people going through it that like have such like positive outlook on it has been really, really great at diminishing, you know, that that fear. And, you know, course, when you're going through it, it's it's human nature, right? To have fear and and all that. But to be able to, you know, still have hope and still see the positive behind it is really special.
00:30:31
Speaker
o And that goes back to the importance of community and knowing people with the same condition as you. 100%. Yeah.
00:30:42
Speaker
I have one last question for you. Yes. What's your happy place? a place where you feel at peace? oh My happy place.
00:30:53
Speaker
I think for me, my happy place is anywhere that I can be myself. I can be unapologetically... myself, a place where, you know, all my favorite people are.
00:31:06
Speaker
My dogs definitely have to be there there. They make me happy and they, you know, remind me of the little things. Yeah, just anywhere that I can, you know, feel myself and feel confident in myself.
00:31:19
Speaker
It's interesting because it it goes back to that transition of being vocal about your condition. Yes, for sure.
00:31:31
Speaker
Wow. Well, thank you so much. I said it already, but really love what you do. And I'm sure people who receive those packages must feel that someone's looking after them.
00:31:47
Speaker
And that that's a very special thing to do. So that's amazing. Oh, yeah. and thank you for sharing. ah I didn't know anything about it. And um I love hearing from people like you who make it sound like it's not a big thing.
00:32:05
Speaker
And from my side, I was thinking, wow, that must be so difficult. But no, it's something you can live with. Yeah. Well, thank you so much for having me and and listening to to my story and everything else. so I appreciate you.
00:32:22
Speaker
Thank you.