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Episode 81: Carter Hemion - EDS & MCAS image

Episode 81: Carter Hemion - EDS & MCAS

E81 · On One Condition
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22 Plays9 days ago

Carter lives with multiple conditions, and this episode is focused on two of them: Ehlers-Danlos Syndrome (EDS) and Mast Cell Activation Syndrome (MCAS). Carter’s story is one of quiet endurance, misdiagnosis, rediscovery, and ultimately purpose.

Born with classical EDS caused by a collagen gene variant, Carter spent two decades sensing “something wasn’t quite right” before receiving a diagnosis. Years of chronic pain, joint instability, GI issues, and nerve problems were compounded by mast cell symptoms that mimicked psychiatric illness – hallucinations, mood swings, anxiety.

We discuss the profound shift after Carter’s diagnosis and receiving the right treatment for MCAS: clearer thinking, emotional stability, and physical relief. Deeper than the physical symptoms, Carter speaks with wisdom about reclaiming selfhood and finding peace. He also reflects on discovering a community who understands him, and finding a purpose in advocacy.

Carter’s reflections on resilience, stigma in healthcare, identity, and hope are thoughtful and deeply human.

The song that he chose is Standing Outside the Fire by Garth Brooks.

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Transcript

Introduction to 'On One Condition'

00:00:00
Speaker
Hi, I'm Sylvain Bertolo and you're listening to On One Condition, podcast to raise awareness about health conditions by listening to people who live them every

Guest Introduction: Carter Hemian & His Story

00:00:09
Speaker
day. My guest today is Carter Hemian and we're going to talk about EDS and mast cell activation syndrome.
00:00:18
Speaker
Hi Carter, thank you for joining me. How are you doing? I'm doing well. It's nice cold morning here in the Seattle area. How are you? I'm doing great.
00:00:32
Speaker
Although if you're talking about the weather, I'd like it to be sunny for once.

Optimism Through Music

00:00:38
Speaker
As you know, i love starting with a song. So could you tell us which song you chose and why, please? Yeah, I've gone back and forth so many times in the last week, but I think a song that I always come back to is Standing Outside the Fire by Garth Brooks.
00:00:55
Speaker
I listened to a lot of him growing up, and a lot of know Phil Collins and Elton John and kind of a lot of mixed music mostly what i'll listen to for the most part but i always come back to garth brooks and to that song i think you i'm so i like to take chances and i'm a romantic and i think it's just a nice song about you know taking chances and being willing to put yourself out there Nice.
00:01:24
Speaker
I like that. What do you mean by taking chances? You say you like taking chances. What do you mean by that? Trying not to say no to things just because they're scary or they might not end well.
00:01:38
Speaker
being willing to be optimistic and hopeful and look for the good in things, to go after them, to see the best in people and try to find the best in people and in the world around.
00:01:54
Speaker
think there's a lot of ways that things can always go wrong, but there's a lot of ways that they can go right. And that's what I try to focus on. Nice, very strong and positive message to start with.
00:02:07
Speaker
I like that.

Understanding EDS and MCAS

00:02:09
Speaker
So we are going to talk about two different conditions that affect you today. EDS, Ehlers-Danlos Syndrome, and Mast Cell Activation Syndrome.
00:02:22
Speaker
Just for our listeners, We've already covered EDS on a previous episode of the podcast, so we may not spend as much time on EDS as on that other episode. ah But it makes sense, as far as I understand from my discussion with Carter, to talk about both EDS and mast cell activation syndrome for yourself.
00:02:48
Speaker
together because they are linked. It's probably best to start with where it started for you. So which one of those conditions where you were you aware of first and how did you start your diagnostic journey?

Carter's Diagnosis Journey

00:03:08
Speaker
I was aware of the EDS a little bit before the mast cell. I was born with my EDS. I have one of the genetically defined types, one of the rare ones, the classical type that runs in my family. We didn't know that until after I got diagnosed.
00:03:25
Speaker
It is caused for me by a variant in a gene that affects type 5 collagen. And this is the kind of collagen that's all over your body. all the connective tissue so it affects my joints it affects my skin in some cases it can affect the heart it affects my gi system pretty much everything i've had a lot of kind of mysterious injuries and nerve problems and skin problems over the years i've had you know gi problems since i was a little kid there was no real onset there was no real trigger it was just always there
00:04:03
Speaker
And then over the years, things snowballed a bit, started getting worse. It's not something that has any kind of approved treatment or no way to get rid of it.
00:04:15
Speaker
You know, it's always going to be there and it always has been there. It's just changed its form a bit over the years. For me, I didn't get diagnosed until after many years of having symptoms. I was always missing school, having stomach problems.
00:04:31
Speaker
I ended up having a lot of hand and arm problems when I was in high school. But even looking back, there were things like having trouble holding a pencil the right way because my fingers all bend backwards and can't quite hold things the right way. And so when I got diagnosed, it was maybe like the second or third, I think the third orthopedic surgeon that I had talked with about symptoms.
00:04:56
Speaker
And that was after stepping away from college and stepping away from work because I was having so many health issues. And so I ended up needing surgery on both of my thumbs, my wrists, my arms.
00:05:10
Speaker
By happenstance, there's a clinic, probably the closest orthopedic surgeon to my house has world experts on these conditions. So my diagnosis was a combination of good luck and privilege and ending up at the right place at the right time to find someone who knew what it was and was able to recognize this and start referring me out to specialists.
00:05:33
Speaker
And that was when I was 20. And so that was 20 years of knowing that something wasn't quite right and wondering what was going on but not having words for it.
00:05:45
Speaker
Why did you need surgery on your thumbs, wrists and arms? I've been dealing with a lot of chronic pain over the years since probably toward the end of high school where i it was hard to grip things, I was dropping things, I was in pain a lot of the time and having to step back from a lot of different things.
00:06:08
Speaker
I at the time was was doing an English major and working for newspapers in my area And so that involved a lot of writing, a lot of typing.
00:06:19
Speaker
And initially, i was just kind of told it was an overuse thing and take it easy for a little bit. i tried going to orthopedic therapy quite a few times over the years at different clinics, and nothing really helped.
00:06:35
Speaker
And it turns out that's not uncommon with my condition.

Living with EDS

00:06:39
Speaker
So with my thumbs, because of the hypermobility, the bones weren't really staying where they needed to be the kind of same thing with my wrists and other fingers and part of this is that the ligaments are too stretchy and so it's easier to partially dislocate or fully dislocate joints all over the body So i was I didn't know that I was having that problem with my hands where I could just partially dislocate my joints doing everyday activities.
00:07:08
Speaker
ended up learning. i was also doing the same thing with my shoulders where over the years I talked to different doctors and showed them the kind of weird things that my shoulders would do. and ask about what was going on. Same with my elbows that bend backwards and nobody really had an answer. Just don't do that if it hurts, which wasn't particularly helpful when you need to move in order to get dishes out of the cupboard or make dinner get dressed.
00:07:39
Speaker
So it's not necessarily voluntarily that you would dislocate your shoulder. Does lifting something affect it as well?
00:07:50
Speaker
Yeah, I had had no idea that I was partially dislocating my shoulder multiple times a day for years. I thought maybe I'm just a little clumsy. So learning that there was a reason for the pain and it wasn't just me being clumsy and in my head about it was a little bit surprising and ended up kind of changing the way I've thought about myself and about how I've lived my life over the years.
00:08:17
Speaker
to know that there's a reason for these things and I'm not just kind of weird and clumsy. But now, you so you said that there's no treatment. So how do you manage the condition now you know that it's EDS?
00:08:31
Speaker
Yeah, so there's no FDA approved treatment. There's nothing that's officially approved to treat it. It's just a lot of managing the symptoms and the co-occurring disorders as they develop.
00:08:43
Speaker
So that can look like physical and occupational therapy, medications to treat certain symptoms or treatments for the various co-occurring conditions.
00:08:54
Speaker
It's very different for every person. i have certain things that I do that help me I also um have to be pretty careful about skin care because my skin's a little bit more fragile and if I don't take care of things then sometimes I get skin infections or have I tend to have a hard time healing things so it'll take me a lot longer to heal small injuries that wouldn't be so much of a big deal for someone else.
00:09:22
Speaker
I've got all my appointments and my special bandages that don't rip my skin like most do. It's been a lot of trial and error. to figure out what kinds of movement I can safely do in my body and what kinds of things I can do to help nerve pain and help the skin problems, to figure out a more specialized diet because I also have gastrochoresis, so my stomach muscles don't work right and it's harder to digest things.
00:09:52
Speaker
and being a little bit more careful. Like I have some light sensitivity, I have be more mindful of that and the places that I go and the things that I watch to avoid triggering migraines.
00:10:05
Speaker
It's kind of a variety pack things There's something a little bit wrong with anything where there's some connective tissue. So it's a lot of just trial and error of figuring out accommodations and different assistive tools that I can use to make my life a little bit easier.
00:10:21
Speaker
Braces that I've gotten from physical therapists. I use forearm crutches a lot of the time when I'm out walking around. It helps take some of the weight off my knees and reduce the pain to be able to be more active and get out more.
00:10:35
Speaker
i use different tools in the kitchen help open jars. My hands and wrists work a lot better than they ever did before. have some pain now and then.
00:10:47
Speaker
It sounds like a lot of adaptation. i guess once you know that you have EDS and it all makes sense, then it might be easier to know that, okay, I need to adapt because it's my body that's like this rather than like I need to be careful.
00:11:06
Speaker
But is that things that you were conscious of before your diagnosis I would say to a certain extent, but definitely not the same. Like I had different braces and splints that I had and used and had gotten practice with using voice to text for a lot of writing.
00:11:27
Speaker
to be able to sustain what I was already doing and find workarounds. And I've learned you know some medications that did and didn't work and adaptations for the acid reflux of breaking up meals smaller throughout the day and know not eating several hours before bed. but I think it definitely made a big difference when I got diagnosed.
00:11:52
Speaker
And that was also because I got very quickly referred to a support group and to a place where I could connect with other people who have EDS. And being able to find that community.
00:12:04
Speaker
especially so early within just the first couple of weeks of diagnosis made such a huge difference for me because then I knew other people who had gone through similar things and had similar joint problems and similar GI problems and nervous system problems.
00:12:21
Speaker
All these kind of intersecting and overlapping experiences where even though i have a different type of EDS than a lot of other people, And even though we don't all have the same experiences of these syndromes, there's enough overlap in symptoms that we can talk about it. And so I learned a lot about different kinds of tools that are available to help with different kinds of pains and joint problems, just all kinds of different things that I never would have thought of on my own.
00:12:51
Speaker
yeah Yeah. We've talked a lot about the power of community on the podcast, and it's so great to be able to talk to people, even if they're not in your area.
00:13:04
Speaker
Social media really helps connect.

Exploring EDS and MCAS Connection

00:13:08
Speaker
So if you don't mind, I'd like to talk a bit more about mast cell activation syndrome.
00:13:15
Speaker
Could you tell us how it's related to EDS first, if you don't mind? That's a big question, and I think one that we're still learning about. So mast cells are a kind of cell and immune system. They're found in connective tissue, which is maybe one of the theories of why they're connected. I'm definitely not an expert on how they're connected and what exactly all the mechanisms are behind them.
00:13:42
Speaker
think especially as a syndrome, we're still learning what the actual mechanisms are of these different kinds of mast cell problems. And there's a lot of different presentations. But essentially, these cells are really helpful for things like allergies or responding to inflammation with injuries.
00:14:01
Speaker
You know they're an important part of the immune system but in cases like mine they don't really know how to turn off and so they're constantly reacting to all kinds of triggers being the connective tissue and all over the place in the body.
00:14:17
Speaker
have a lot of problems with reacting to things like allergens, and so I'll break out in hives, I'll get all kinds of GI symptoms that are very uncomfortable, headaches and joint pain and inflammation and just overall not feeling too great.
00:14:38
Speaker
And a lot of people, at least with a hypermobile form of EDS, tend to also have mast cell activation syndrome. There's a lot of overlap between the two. i have a different type of EDS. I think it's a little bit less common for my type to also have mast cell, but that's also under-researched. There's still a lot left to learn about classical EDS and about most of the other kinds of EDS as well.
00:15:05
Speaker
Okay. How did you realize that you have this condition as well?

Carter's Path to Accurate Diagnosis

00:15:11
Speaker
I think my actual diagnosis came after I had my EDS diagnosis.
00:15:16
Speaker
My diagnosing doctor asked me some questions for screening and referred me to a local specialist who understands this and was able to die do the tests and start treating me and figure out what's going on.
00:15:32
Speaker
But before that, it was just a lifetime of unexplained symptoms and lifetime of not knowing what it was or why these things were happening.
00:15:46
Speaker
In my case, I also have neuropsychiatric symptoms with it. That's something that has also developed over the years as well as the rest of the full body symptoms.
00:15:57
Speaker
So I remember like looking back as a little kid, like lunchtime was kind of rough in elementary school. So I would get this flushing across my cheeks where I was reacting to different things and not knowing.
00:16:10
Speaker
and I would be really anxious and worried about unrealistic things and get these stomach aches and not really have an explanation for any of it.
00:16:21
Speaker
And then as I got older, different things started appearing. of you know My eyes would get really itchy and watery all the time. and i was also developing depression and feeling even worse and getting acid reflux around the same time and then years later that was also developing into know why i'd have these reactions that look like food allergies of i get like the itchy mouth and throat I would get just horrible, horrible GI symptoms with eating like certain foods very immediately.
00:16:57
Speaker
But allergy testing didn't show anything because it's not quite the same pathway or same kind of reaction for me that would show up on a traditional allergy test.
00:17:08
Speaker
And meanwhile, at the same time, i was starting to get hallucinations and mood swings at the same time that these reactions were developing and starting to get hives every time I took a shower from I've learned is me just reacting to sweating. anytime I'm out and it gets too hot, like exercising or taking a hot shower, sweating from normal things, I get these hives break out in these red spots.
00:17:37
Speaker
wow all of these things were just developing together and unfortunately there's a tendency to try and treat symptoms individually instead of looking at the whole picture and so as i was developing these migraines and mood problems and anxiety and hallucinations i kept getting sent to psychiatry meanwhile because i was being sent there and having normal allergy tests and normal results from other kinds of just baseline blood tests it was assumed that everything was just psychiatric instead of looking deeper at what was going on with my immune system looking deeper at what was going on with my chronic pain because i was having normal x-rays but having all kinds of joint pains and difficulty doing things
00:18:33
Speaker
So it was a really challenging journey, especially as I started asking for help more and just getting referred to the same people and put on the wrong treatments.
00:18:45
Speaker
I'd ended up getting misdiagnosed bipolar 1, borderline personality disorder. i e had diagnoses of severe depression and anxiety and OCD and...
00:18:58
Speaker
was trying to figure out all of that meanwhile i kept breaking out in hives all the time and felt sick to my stomach and had a hard time eating enough and didn't know that all of these things were connected with each other and the kinds of mouth symptoms i was getting from foods and gi symptoms and the migraines and joint pain and all of these things that were being handled separately instead of being looked at as part of a bigger picture where they could be connected because connective tissue is everywhere and these immune of cells are everywhere.
00:19:35
Speaker
And so it wasn't until after being put through a lot of the wrong treatments getting misdiagnosed and going through a lot of stress and worry and pain that I finally got a diagnosis.

Life After Correct Diagnoses

00:19:47
Speaker
And that was really because of my EDS diagnosis and having a specialist who recognized that those things are linked and was able to send me to a mast cell specialist.
00:19:56
Speaker
And really within a few days of getting started on a mast cell stabilizer that was right for me, all of that just kind of faded away. and the same with, you know, when I got on the right medication for my hives, it made life a lot easier and figuring out just the right medications to treat my immune system reacting to everything that's not perfect but it makes life a whole lot easier yeah i remember that first week of starting on one of my medications that I'm on.
00:20:26
Speaker
I take it several times a day, like every few hours to manage symptoms. So it's a little bit you know annoying sometimes to have to take medication all throughout the day at different times.
00:20:39
Speaker
But I remember that first week realizing that I could think clearly and i could i felt hungry for the first time and nine or 10 years.
00:20:49
Speaker
and i wasn't hallucinating every day, I wasn't having irrational thoughts. My migraines had gotten shorter and less intense.
00:21:00
Speaker
It was just such a difference. Just getting on the right medications and the right treatment for the right diagnosis, it really shifted everything.
00:21:12
Speaker
oh are Yeah, I can imagine. It's interesting because it sounds like you were sent to so many different people, but until they had this central point of knowing that you have EDS, they weren't looking in the right place. Is that true, saying it like this?
00:21:34
Speaker
think

Challenges in Healthcare System

00:21:35
Speaker
so. hence I definitely want to be clear that it's nothing against healthcare providers as individuals. I think just as a system, we've gotten so used to the idea of treating symptoms individually, instead of holistically looking at a whole person and the way they might be interlinked.
00:21:54
Speaker
yeah and especially with appointments often being limited to such a short time I don't think it's the fault of our healthcare providers who work so hard to try and treat people and make life better much as just we haven't always been prepared for treating or rarely diagnosed diseases or for treating complex multi-systemic diseases yeah that's a good point on And especially the way the healthcare systems are built.
00:22:27
Speaker
Once you go past the GP or general level, you get to see people who are very specialized in what they do.
00:22:37
Speaker
And the more specialized they get, i imagine the less they can think about this multi-system impact and the cause for that. So yeah, it makes sense.
00:22:50
Speaker
And you said that you're you're on medication it positively affects your symptoms. So as it Because you you mentioned depression, hallucinations, mood swings. So is all of this under control?
00:23:08
Speaker
Yeah, it kind of felt like magic, like flipping of a switch. Within just like days of getting on the right medications, all of that settled down and just kind of stopped.
00:23:23
Speaker
It's also made it a lot more clear, like when I have a big reaction to something, and the kind of mental health symptoms and headaches all come at the same time as the hives and flushing and GI symptoms.
00:23:38
Speaker
where it's it seems so clear now that all of those come together and are linked, but when I was dealing with it all chronically and didn't realize that these different body systems were working together in that way, that it was a lot murkier.
00:23:54
Speaker
It's also just been a little bit strange because that shift happened so fast with just getting the right treatments. to have to adjust to thinking and processing the world in such a different way than I had gotten used to and accepted as being my normal.
00:24:12
Speaker
It's been an interesting journey after that and after getting it all figured out and getting misdiagnoses corrected and removed and all the things that were such a problem and to remission.
00:24:25
Speaker
thats It's been interesting kind of finding my identity again after that and figuring out who I am and what i can enjoy and what the world looks like to me.
00:24:38
Speaker
so what's what's the difference then? Do you think it's changed your personality or has it helped you discover who you truly are in a way?
00:24:50
Speaker
think so. i think it's not so much that I'm a different person as much as I see things a lot differently. To be able to have not be dealing with the bouts of paranoia and hallucinations, to be able to learn to trust my sense of reality again, has been interesting.
00:25:11
Speaker
To be able to have a more stable mood and not be so worried and stressed and down all the time. and to not be thinking about so many thousands of different things all at a time and have my head so full of different thoughts has been quite a big adjustment especially because it was very quick from getting the right treatment and a very very clear shift that i definitely have found a lot more optimism
00:25:42
Speaker
and better outlook toward the future and at the same time, been able to just feel a lot of say empathy and compassion and understanding of healthcare systems from the other side of you know the kinds of ways that I was treated misdiagnosed bipolar versus when that's off my records, I get treated in a different way.
00:26:06
Speaker
and seeing the kinds of stigma when it comes to some of overlapping symptoms but a different name for them. So I still have a lot of care about mental health and healthcare systems and the way we approach different kinds of neuropsychiatric symptoms.
00:26:25
Speaker
And that, you know, we shouldn't be treated better or worse or the kinds of carry the kinds of biases and stigma for these symptoms, regardless of what the name is.
00:26:37
Speaker
Yeah, that's a very good point. Looking back on what you've gone through, what would you tell someone who may be experiencing the same symptoms as you are and have not got their EDS diagnosis?

Advice and Advocacy

00:26:55
Speaker
What would you tell them?
00:26:57
Speaker
That's a good question. I would encourage people stay hopeful, stay curious when hope is hard, to advocate for yourself with grace, to give yourself grace in the challenges, to give your healthcare providers grace and their learning to not give up, to rest and take breaks and take care of yourself, whatever that looks like, to talk with people you trust about it, to seek community, both in your friends, your family, your loved ones, and in the wider disability and chronic illness community, that it's not a journey that anyone should have to do alone.
00:27:48
Speaker
Even if you feel you can, you don't have to There are other people who understand to try to build a collaborative relationship with any healthcare care providers you visit. It's okay to not know everything all the time.
00:28:03
Speaker
Even if it's frustrating to not know everything all the time, it's okay. None of us can be an expert on anything except our own experiences with these symptoms and with our life.
00:28:16
Speaker
And that's okay. All very sound advice. You talked about work earlier, that you had to stop studying. I think you you you couldn't work anymore. So now are you able to work? Are you in a situation where you can be active despite all your symptoms?
00:28:37
Speaker
I'm definitely doing a lot better. You know, I still have a lot of symptoms that I manage every day Sometimes have a hard time managing every day. But since being able to get a diagnosis and learn in better ways to manage it medically with different kinds of medications and therapies and treatments and in adapting to different kinds of tools,
00:29:01
Speaker
I moved to work again, which has been really nice. I've taken a kind of different path. I had started volunteering in the rare disease space around when I got diagnosed.
00:29:14
Speaker
I had also gotten several other rare or rarely diagnosed condition diagnoses are around the same time my EDS and mast cell diagnoses. Having spent so many years not understanding what was going on and struggling so much,
00:29:31
Speaker
you know, that's not something that anybody should have to deal with and that I don't think anybody should continue to deal with. And so I started volunteering with different organizations in the rare disease space, doing know things from legislative advocacy, meeting with legislators, writing articles about different kinds of issues, blog posts about my experiences, working together with other people to try and push for some change.
00:30:01
Speaker
And as as I started getting a better idea of what it is that I'm actually living with and connecting with people within various different disease communities, I found a lot of connection and a lot of hope.
00:30:16
Speaker
I had also come from a background where I'd been pretty involved with LGBTQIA plus advocacy and with mental health advocacy before my diagnosis have a hard time seeing something wrong and not trying to do something about it.
00:30:33
Speaker
It's hard to know something is not working and but just leave it for me.
00:30:41
Speaker
So now I'm currently working with a few different groups. My kind of main day-to-day is director of operations with the Association.
00:30:52
Speaker
They do a lot of wonderful work. I've also met other people with mast cell disorders and wide variety of different kinds of immune system problems and various rare diseases and a lot of shared experience, even across very different experiences.
00:31:10
Speaker
And so I care a lot about making sure that people have access to resources to advocate for themselves, both at home and with healthcare care providers and medical systems, to have support groups, to be able to celebrate the little things and the big things without taking big health risks to find the accommodations that we all need to get by.

Finding Peace and Resilience

00:31:35
Speaker
That's meant a lot to me to be able to kind of k connect and support other people when these communities have been so supportive of me.
00:31:46
Speaker
Wow, that's amazing. That's absolutely amazing.
00:31:52
Speaker
admire people like you who give so much to the community. Please keep doing what you do. I have one last question for you. What's your happy place? A place where you feel at peace?
00:32:08
Speaker
would say for me... I've always found some peace hiking and being outdoors and you know forests and mountains and beaches.
00:32:22
Speaker
I can't do the same kind of big hikes that I used to with my joint problems, my spine and my knees and all that. Can't take it the same way, but I've been able to adapt and, you know, come out with my crutches and explore the trails.
00:32:37
Speaker
I think Probably the most peaceful place in the world for me is just sitting on a rock in a forest somewhere. Just be out there and feel connected in something bigger.
00:32:51
Speaker
Definitely takes me out of myself. And when I'm thinking too much or stressed about different projects I'm working on, just getting outside and relaxing somewhere where can be in something bigger is very peaceful for me.
00:33:09
Speaker
Yeah, I get that. lot of serenity to find in nature. You seem to have had an incredible journey and I'm not going to be able to summarize it in 30 seconds.
00:33:23
Speaker
What i find interesting is that you have had so many things to deal with. It makes me reflect on on the true meaning of resilience and being able to adapt, constantly adapt.
00:33:42
Speaker
course you've got to a point where you needed the healthcare system to support you but before that it feels like you said 20 years before you had your diagnosis so yeah there was so much resilience in you to be able to to just adapt to your body that's incredible and i really like what you said about finding your own self and I don't know if finding is the right word but being able to realize who your own self is and you seem to have so much strength in you which makes you do a lot of very wonderful things for the communities
00:34:20
Speaker
Amazing. found your story quite remarkable. So thank you for sharing.

Closing Reflections

00:34:28
Speaker
Thank you. I appreciate you spending this time with me and being here to share stories and ah connect people in this way across the world where all these different people are listening. I think it means a lot.
00:34:43
Speaker
No, thank you.