Speaker 1: We knew there was a mass, but we didn't know
Speaker 1: if it was but I as a cancer. There was
Speaker 1: just so much we didn't know. Persistent pain is something
Speaker 1: that we really see a lot. They tend to accumulate
Speaker 1: so many injuries and have so much pain that the
Speaker 1: nervous system itself starts to become part of the problem.
Speaker 1: It was so hard to be anything other than my
Speaker 1: medical conditions. It almost just felt like I was. I
Speaker 1: wasn't living, I was just essentially existing. I was existing
Speaker 1: to find out why this was happening to me. How
Speaker 1: terrifying would it be to fight an unknown enemy, one
Speaker 1: you didn't recognize and didn't see coming. What if that
Speaker 1: enemy was coming from within a disease that even doctor
Speaker 1: couldn't identify. Nearly half of all Americans suffer from some
Speaker 1: chronic illness, and many struggle for an accurate diagnosis. These
Speaker 1: are their stories. I'm Lauren Bright, the checko, and this
Speaker 1: is symptomatic. Kyle Thompson grew up in rural Georgia, an adventurous,
Speaker 1: active kid, playing any sports. His parents would let him
Speaker 1: try football, basketball, baseball, and acrobatic tumbling, while also diving
Speaker 1: into the world of video games. I'm big into Overwatch.
Speaker 1: That's probably one of my favorite games. Overwatch, and there's
Speaker 1: Rindescape and Rust are a couple of the ones that
Speaker 1: I play. And then of course, like you know, there's
Speaker 1: like Terraria, Minecraft, just a lot of those games passed.
Speaker 1: The phobia is really funny like that one. So if
Speaker 1: you've heard it, heard about any of those, oh yeah,
Speaker 1: big Mindcraft Household was huge. Minecraft. I think it's kind
Speaker 1: of like a progression from Legos. Oh absolutely absolutely. What
Speaker 1: kinds of things did Kyle loved to do? Oh? So
Speaker 1: he was always on the move. Um, we're pretty proud
Speaker 1: he's we kept him alive this Um. He was just
Speaker 1: a go getter. If he had to be sitting still,
Speaker 1: he was not happy. That was Laura Thompson, Kyle's mom.
Speaker 1: I was a an energy ball. That's how my mom
Speaker 1: would describe me. I was constantly wanting to run around
Speaker 1: or just follow people and just run and just do
Speaker 1: whatever I could get my hands on. He was just
Speaker 1: busy and active, and as soon as he was old
Speaker 1: enough he started playing sports. At age four, he started
Speaker 1: playing baseball. As soon as Kyle's ordered to play more
Speaker 1: competitive sports, the injuries started to rack up. I would
Speaker 1: constantly come back inside from playing outside and I would
Speaker 1: have a bunch of cuts and bruises and weird just
Speaker 1: injuries and little stuff like that. And you know, I
Speaker 1: was always just told, oh, you're an active child. You know,
Speaker 1: it's just because he's a boy, or he's very active
Speaker 1: when he's outside. What seems like normal active kid injuries
Speaker 1: was actually the start of a really long journey of
Speaker 1: symptoms and multi decade battle for Kyle to find a
Speaker 1: diagnosis for what was plaguing him. I actually have a
Speaker 1: picture of him with a cast on one leg and
Speaker 1: a walking boot on the other leg, and he was
Speaker 1: insisted on still playing catcher in baseball because he didn't
Speaker 1: have to move. So it's a pretty funny picture, but
Speaker 1: that was him. He just loved it, so he did.
Speaker 1: He just he just pushed through. Kyle was in and
Speaker 1: out of the hospital constantly. Injuries that wouldn't be too
Speaker 1: difficult for most people to brush off seemed to land
Speaker 1: him back in the r There was this one time
Speaker 1: where I was walking in a forest with my brother
Speaker 1: and we were just hiking through the woods being kids,
Speaker 1: and I stepped in a small hole in the woods.
Speaker 1: I broke my foot. I completely like shattered my entire
Speaker 1: foot because I stepped in a hole wrong. He was
Speaker 1: literally sitting on a bike and he just popped the
Speaker 1: handlebars up and the radius bone in his arm broken two.
Speaker 1: So he walked home and he just I saw his
Speaker 1: arm and I said, let's go. You know, the doctor said,
Speaker 1: bones just don't break like that the whole the bike.
Speaker 1: Seeing her son's ongoing suffering, Laura had her mother's intuition
Speaker 1: tangling that something was off. It couldn't just be that
Speaker 1: her kid was unmucky. As a mom, I questioned all
Speaker 1: the time, should we be checking his bones? Is there
Speaker 1: something wrong? I don't feel like he should be hurt
Speaker 1: this much. And I heard over and over again, he's
Speaker 1: just got bad luck. He's just clumsy. He needs to
Speaker 1: be more careful. But it was just the littlest stuff
Speaker 1: ended up being such big injuries. So you just had
Speaker 1: your mother's instinct and this nagging fear that something deeper
Speaker 1: was going on. Most of his life I did. I
Speaker 1: felt like something was just wrong. You know, he had
Speaker 1: so many friends and none of them were going to
Speaker 1: the e R like this many times. I mean, I
Speaker 1: know other kids were injured, but it was to the
Speaker 1: point where it was like something just is not right.
Speaker 1: That's how I felt. It felt like Kyle couldn't go
Speaker 1: more than two months before heading back to the e
Speaker 1: R with another break or sprain. Each time, the doctors
Speaker 1: chalked it up to growth plate fractures as part of
Speaker 1: Kyle's teenage growth spurts. How many bones did he break? Like?
Speaker 1: How frequently was he injured? Oh my goodness, I would
Speaker 1: have to sit and count how many either braces or
Speaker 1: casts or oh goodness, there has to be over twenty,
Speaker 1: easily twenty. And then when he he his ankle pain
Speaker 1: just became horrific. All of these injuries made Kyle's middle
Speaker 1: school and early high school years extremely difficult. He always
Speaker 1: seemed to be in a cast, a walking boot, on crutches,
Speaker 1: or all three. It got in the way of him
Speaker 1: being able to just go to lunch without needing the
Speaker 1: help of a friend to carry his lunch tray. He
Speaker 1: was teased a lot. I think I tried to protect
Speaker 1: him from some of that. Kids would call him stormtrooper
Speaker 1: just things like that, and they would make fun of him.
Speaker 1: I can't imagine, particularly given you know your desire to
Speaker 1: be active how difficult that must have been psychologically on you.
Speaker 1: Oh my gosh. Yeah, Like all I ever wanted to
Speaker 1: do was play sports or just hang out with my
Speaker 1: friends and just like skateboarding activities or go biking and
Speaker 1: just things like that. It always felt like I was
Speaker 1: held back by my injuries, which is like such a
Speaker 1: terrible experience because when it comes to injuries, the normal
Speaker 1: person goes through a broken arm once in their life
Speaker 1: or something like that. And to go through constant breaking
Speaker 1: of bones and dealing with physical therapy and going to
Speaker 1: the doctors, it was very isolating, and obviously, at the
Speaker 1: age of fourteen, no one around me understood what I
Speaker 1: was going through. So it's not like I could turn
Speaker 1: to my friends or turn to anyone around me. It
Speaker 1: was it was only myself, you know, going through these things.
Speaker 1: So it was really tough on my mental health for sure.
Speaker 1: Relentless teasing from kids who couldn't comprehend Kyle's suffering and
Speaker 1: frustration with his own situation. His body physically could not
Speaker 1: keep up with his desire to do just everyday kid things.
Speaker 1: On top of the frequent injuries, there was also a
Speaker 1: chronic lingering pain. When you talk about the injuries that
Speaker 1: you had. Were you also experiencing ongoing pain? And how
Speaker 1: would you describe that kind of pain to me? Yeah?
Speaker 1: So I dealt with what I would just call it
Speaker 1: as a child, as I was having weird pain. If
Speaker 1: I were to describe it to anyone, it would be
Speaker 1: so difficult because it was so uncomparable to the normal
Speaker 1: pain that kind of anyone experiences. My bones were literally aching.
Speaker 1: I mean I would lie awake in bed just struggling.
Speaker 1: It was awful to do with this underlying chronic pain
Speaker 1: was ignored as the doctors focused on the individual injuries
Speaker 1: in front of them each time, Fix this sprain, fix
Speaker 1: this break, all without seeing the dots connecting each of
Speaker 1: these events together. Like why isn't he healing? Right? I questioned?
Speaker 1: You know a lot, but it just didn't get me anywhere.
Speaker 1: I couldn't the doctor. Would we take him in for
Speaker 1: an injury and they would focus on that injury if
Speaker 1: they didn't look at the whole picture, and they didn't
Speaker 1: look at even his former injuries and things like that
Speaker 1: and put it together as a big picture. Laura was
Speaker 1: constantly told it was just bad luck, or that she
Speaker 1: should wrap Kyle in bubble wrap. The guilt of feeling
Speaker 1: like a bad parents started to creep in. She and
Speaker 1: Kyle continued their search for answers. Kyle was prescribed accutane
Speaker 1: for his severe acne, which appeared to trigger new debilitating symptoms,
Speaker 1: symptoms that shed new light on what was potentially attacking him.
Speaker 1: I turned sixteen and I was dealing with a lot
Speaker 1: of acne, and so I started on a medication called acutane,
Speaker 1: which has a lot of serious side effects. It's a
Speaker 1: really strong medication, and I had pretty much all of
Speaker 1: the red flag symptoms, the ones that are like you
Speaker 1: need to stop the medication, called your doctor and all this.
Speaker 1: And I was experiencing blackouts. So I went stand up
Speaker 1: after sitting down for a little bit, and I would
Speaker 1: lose my vision and I would feel like I was
Speaker 1: going to pass out, so I would kind of like
Speaker 1: stumble and fall to the ground. And at that point
Speaker 1: we were like, okay, so something serious is going on.
Speaker 1: It was sent to a pediatric cardiologist who ultimately diagnosed
Speaker 1: me with postural orthostatic tachycardia syndrome POTS. POTS. Postural orthostatic
Speaker 1: tachycardia syndrome, also known as POTS, is an abnormal increase
Speaker 1: in heart rate that occurs after sitting up or standing.
Speaker 1: So that was my first kind of true diagnosis. But
Speaker 1: you know, it didn't really leave me with any real answers.
Speaker 1: It still had nothing to do with any of my injuries.
Speaker 1: It did not help with my worries of all of
Speaker 1: his injuries because they were very not related. That diagnosis,
Speaker 1: when you initially were given it, did that make you
Speaker 1: hopeful that now you had coping mechanisms to deal with it,
Speaker 1: that things were going to change. Honestly, no, it felt validating,
Speaker 1: of course for a couple of reasons, but ultimately it
Speaker 1: was a very small piece of the puzzle and it
Speaker 1: was probably the least important one. It really felt like
Speaker 1: a small victory. And of course I I still appreciate
Speaker 1: the fact everything that my cardiologists did, but it wasn't enough.
Speaker 1: I Kyle. I have to say my heart kind of
Speaker 1: breaks for sixteen year old Kyle because you're going through
Speaker 1: all of that and then you're dealing with acne, which
Speaker 1: I know lots of teenagers deal with, but when you're
Speaker 1: dealing with it to the point that you feel you
Speaker 1: have no other choice but to go on accutane, you
Speaker 1: just must have felt like you were getting bombarded on
Speaker 1: every single front in terms of your health. Yeah, it
Speaker 1: was so hard to be anything other than my my
Speaker 1: coal conditions or my symptoms. It was so I'm not
Speaker 1: even sure if I could describe it well. It it
Speaker 1: almost just felt like I was I wasn't living, I
Speaker 1: was just essentially existing. I was existing to find out
Speaker 1: why this was happening to me. You must have felt
Speaker 1: so isolated. It became so overwhelming. It showed everyone noticed it,
Speaker 1: my my parents, my my brother, my friends. It led
Speaker 1: to challenges in my relationships around me. I just lost it.
Speaker 1: It was just too much to handle, and so I
Speaker 1: had to kind of like take a break from everything.
Speaker 1: He's just has had a lot to deal with, all
Speaker 1: the injuries and everything, and it just even made getting
Speaker 1: around school hard. So I think he just got to
Speaker 1: a point where he just needed a break. I had
Speaker 1: to stop. I was having daily panic attacks at school.
Speaker 1: It felt impossible. I felt like I was against an
Speaker 1: impossible battle, and ultimately I had to I had to
Speaker 1: just sort it out at home, and so online school
Speaker 1: was my next best option. Life started to become a
Speaker 1: little easier when Kyle switched to online home school. His
Speaker 1: flare ups became more manageable, and he found a little
Speaker 1: bit of normalcy and happiness when he started taking acrobatic
Speaker 1: tumbling classes from sixteen to nineteen, I stopped having those
Speaker 1: strange growth play issues. We assume that they had closed.
Speaker 1: So I was doing much better in terms of you know,
Speaker 1: at least I was only breaking my ankle once a
Speaker 1: year instead of like six times a year. When he
Speaker 1: tried tumbling. I've never seen him more happy. He just
Speaker 1: that was his favorite thing in the world. To see
Speaker 1: him in a place where he just is so happy
Speaker 1: and loves it. That's what you want for your kids.
Speaker 1: And I thought, oh, maybe this, maybe he'll be able
Speaker 1: to do this without so many injuries. And he was
Speaker 1: also exceptionally flexible. Oh absolutely, yeah. So with every injury
Speaker 1: that you know, of course, they always prescribed physical therapy
Speaker 1: and things like that. In the physical therapist could go, well,
Speaker 1: you can already do all the things that I'm supposed
Speaker 1: to help you get to because he's so he was
Speaker 1: super flexible. Looking back at his recovery from injuries growing up,
Speaker 1: physical therapist often thought he didn't need much help rehabbing
Speaker 1: because he never had a problem with his range of motion.
Speaker 1: But everything changed. When Kyle was nineteen, he started experiencing
Speaker 1: really bad back pain and went to the chiropractor for
Speaker 1: some more treatment. That was really concerned and I, I
Speaker 1: believe I started seeing him for about a month or so,
Speaker 1: and there was this one time that he did his
Speaker 1: adjustments on me and I was like, oh my gosh,
Speaker 1: I feel so much better. Being the super active young
Speaker 1: man he was. Kyle went straight back to acrobatic tumbling
Speaker 1: practice after what he thought was that he a link
Speaker 1: chiropractor appointment, But after practice ended, he started to notice
Speaker 1: an odd sensation in his legs, almost as if they
Speaker 1: were really fatigued or heavy. Can you explain that fatigue?
Speaker 1: When you say it was like nothing you'd ever experienced before,
Speaker 1: how would you describe it to me? So I try
Speaker 1: to explain it. How it feels when you are maybe
Speaker 1: sitting on the floor in a strange position and your
Speaker 1: leg goes to sleep or your foot goes to sleep,
Speaker 1: and the feeling that you have when you stand up
Speaker 1: and some of that blood starts flowing back into your leg.
Speaker 1: It's that kind of numbness that you get. It's it's
Speaker 1: that strange tingling sensation and that was starting to happen
Speaker 1: in both of my legs, and it got to the
Speaker 1: point where I was just an excruciating pain. My lower
Speaker 1: back was just it felt like a knife was being
Speaker 1: jabbed into my spine. I told my parents like I was, like,
Speaker 1: there's something very wrong right now. I could just tell
Speaker 1: there was red flags everywhere. Kyle and Laura rushed to
Speaker 1: the hospital. The doctors took an X ray, but everything
Speaker 1: looked normal. Nothing on it seemed to explain his excruciating
Speaker 1: back pain. Was this tied to the symptoms that continued
Speaker 1: to accumulate or was this something new? It was definitely
Speaker 1: the some of the worst pain I had experienced, and
Speaker 1: it was nerve pain, which was a whole different sensation
Speaker 1: from the chronic pain or muscular skeletal pain which I
Speaker 1: had been experiencing. And the nerve pain was no joke.
Speaker 1: It was brutal on both the mind and bodies. It
Speaker 1: was just a lot. So I went and saw the
Speaker 1: spinal specialist who ordered an m r I and I
Speaker 1: had it the day of which is unheard of. Usually
Speaker 1: an m r I takes a couple of weeks to schedule.
Speaker 1: So I had the m r I that day. That
Speaker 1: I saw him and we're like, Okay, we'll get get
Speaker 1: some answers in a couple of weeks. But Kyle didn't
Speaker 1: have to wait a couple of weeks to find out
Speaker 1: the results. The doctor had a feeling that something was off,
Speaker 1: and luckily for Kyle, that doctor read the results the
Speaker 1: same night. They were terrifying. They walked up to my
Speaker 1: room and said that they had some bad news for me.
Speaker 1: I think my mom already started crying, and I was like, oh, ship, like,
Speaker 1: something is obviously very wrong. I thought I had maybe
Speaker 1: kind of fractured my spine or something, or I'd broken
Speaker 1: a vertebrate or something, and they said they found a
Speaker 1: large tumor in your spine, and I lost it. It
Speaker 1: was I didn't think it was real, and I didn't
Speaker 1: think it was a prank, but I was like, there's
Speaker 1: no way that this is happening to me. That night
Speaker 1: was one of the hardest nights I had gone through. So,
Speaker 1: oh my gosh, Kyle. Yeah, so I can imagine probably
Speaker 1: one of the most difficult things you and your husband
Speaker 1: had dealt with his parents was walking into his room
Speaker 1: and telling him that he had a tumor in his spine. Sorry,
Speaker 1: That was absolutely awful because we knew there was a
Speaker 1: mass We knew it was l ford S one in
Speaker 1: his spine, but we didn't know if it was you know,
Speaker 1: butinn is a cancer. There was just so much we
Speaker 1: didn't know. So that was a very hard conversation. I
Speaker 1: apologize no when he told me that, all I could
Speaker 1: think of was having to walk into the room and
Speaker 1: not having the answers that you want to desperately give
Speaker 1: your child in that moment. Yeah, just just because act
Speaker 1: of what you said, Because you know, as a parent
Speaker 1: and as a mom, you're supposed to be able to
Speaker 1: fix what's wrong, and to just come in with this information.
Speaker 1: It really wasn't until the next day that we met
Speaker 1: with a neurosurgeon that we really knew what we were
Speaker 1: dealing with, and that was that was Actually that conversation
Speaker 1: was fifty times harder. We'll be right back with Symptomatic,
Speaker 1: a Medical Mystery Podcast. Now back to Symptomatic, a Medical
Speaker 1: Mystery Podcast. Kyle Thompson had been suffering from a mysterious
Speaker 1: illness for almost two decades, countless breaks and sprains throughout
Speaker 1: his childhood. A rough fight with the side effects of
Speaker 1: accutane a diagnosis of POTS, which still left his worst
Speaker 1: symptoms on, explaining frustration that no one seemed to hear
Speaker 1: his full story or try to put together all the
Speaker 1: pieces in a way that made sense, and now doctors
Speaker 1: have pound of tumor on Kyle's spine. I was having
Speaker 1: the red flag symptoms of the numbness and the tingling
Speaker 1: and the pain. There was obviously some some serious stuff
Speaker 1: going on, and so I was pretty much rushed to
Speaker 1: the hospital and they got me into my room very quickly,
Speaker 1: and they told me that most likely the chiropractic adjustment
Speaker 1: caused the tumor to herniate, which means it started to
Speaker 1: bleed internally. Three days later, Kyle had surgery to remove
Speaker 1: the tumor. The tumor had intertwined itself so much with
Speaker 1: his spine that the doctors had to remove one third
Speaker 1: of his vertebrae with it. The doctors were luckily able
Speaker 1: to remove the entire tumor and found it was benign
Speaker 1: but had been growing rapidly. All of that was a
Speaker 1: huge which relief to Kyle and his mom, but a
Speaker 1: couple of weeks after surgery, something strange started to happen.
Speaker 1: They noticed a large bump forming at his incision. We
Speaker 1: noticed some weird fluid coming out of it, some clear fluid.
Speaker 1: We're like, what is happening. So we went to the
Speaker 1: doctor and he said, you have a cerebral spinal fluid leak.
Speaker 1: And so I was leaking spinal fluid out of my
Speaker 1: incision and I was having horrible headaches. Cerebral spinal fluid
Speaker 1: leak headaches are no joke. They're terrible, the worst head
Speaker 1: pain I had ever experienced. I couldn't even open my
Speaker 1: eyes while I was in bed, it was so much.
Speaker 1: Kyle had the spinal fluid drained, but the bump returned
Speaker 1: the next morning. He was now at his breaking point.
Speaker 1: Through all of his injuries as a kid, the pot symptoms,
Speaker 1: the scare with the tumor, and now these spinal fluid complications,
Speaker 1: it was adding up to be too much for him.
Speaker 1: I was done. I was mentally that was it. I
Speaker 1: kind of honestly just like gave up. And I didn't
Speaker 1: even want to I didn't want to go. I didn't
Speaker 1: want to deal with another issue because I knew that
Speaker 1: if the bump was back in the morning, I was
Speaker 1: gonna have to have surgery again. On the same area
Speaker 1: that I had been recently cut open into, which it
Speaker 1: was so mentally taxing to think about that again, think
Speaker 1: about the fact that the doctor had once again cut
Speaker 1: into an already damaged tissue. Was a very strange feeling,
Speaker 1: a roller coaster of emotions, symptoms, diagnosis and treatments, treatments
Speaker 1: that felt like they weren't making any significant progress. Even
Speaker 1: the successful surgery to remove the tumor in his spine
Speaker 1: left lasting side effects, leaking spinal fluid. But these lasting
Speaker 1: side effects turned out to be the key clue to
Speaker 1: finally finding out what had been plague and cart all
Speaker 1: these years. After the second surgery, my spinal surgeon came
Speaker 1: into the room after everything had healed, and he said
Speaker 1: I had extremely fragile skin and that he had only
Speaker 1: ever seen that in patients that get diagnosed with Eilish
Speaker 1: Danless syndrome. And I just went, oh my god, I
Speaker 1: mean I just got chills. I just had chills again.
Speaker 1: I was like, did you recognize something is wrong? And
Speaker 1: we were like, okay, what does that have to do
Speaker 1: with me? I don't we don't understand. And we started
Speaker 1: googling the condition, started learning more about what connective tissue
Speaker 1: meant all these things. And my mom and I just
Speaker 1: looked at each other when we were researching these things,
Speaker 1: and she's like, this is you like this, You are
Speaker 1: this condition. You are exactly every symptom that they mentioned,
Speaker 1: or or every feeling or all of the strange things
Speaker 1: that I experienced as a child. Kyle and Laura went
Speaker 1: to see a geneticist who gave them the official diagnosis
Speaker 1: of Eiler's damn those syndrome, also known as e d S.
Speaker 1: That must have been incredible, because it's like you've been
Speaker 1: looking at this puzzle for almost twenty years at that point. Yeah,
Speaker 1: you know, it's funny. It felt like one of those
Speaker 1: uh in those cheesy detective movies where they put the
Speaker 1: newspaper over something in the words match up or whatever.
Speaker 1: It felt like that. It was so at the beginning
Speaker 1: it was very validating, and then a couple of days later,
Speaker 1: I just thought it was comical because it was like,
Speaker 1: there's all these pieces just lined up and it it
Speaker 1: really just made sense. I just thought back and I
Speaker 1: was like, how did no one put this together? Like
Speaker 1: all the signs were there for decades and we just
Speaker 1: needed the one person to think outside the box and
Speaker 1: connect all of these weirds and them together. What is
Speaker 1: this diagnosis meant for you and for for Kyle, Well,
Speaker 1: it means at least we know. Not knowing was harder.
Speaker 1: I think it is a relief. You know there's no
Speaker 1: cure for either stand those there's things you can do,
Speaker 1: and that's good. But knowing that you're not just crazy
Speaker 1: and making things up, and sometimes I want to go
Speaker 1: back and say, you see you guys, you know, don't
Speaker 1: be so mean. You don't know what people are dealing with.
Speaker 1: So it's it's helped in a lot of ways a
Speaker 1: bit of much needed relief and validation for Kyle and
Speaker 1: his mother. Knowing the illness they were up against, they
Speaker 1: were no longer blindly battling this disease. Kyle's current doctor,
Speaker 1: Dr Linda Bluestein shares a bit more on the typical
Speaker 1: symptoms of e d S. So e d S stands
Speaker 1: for Ailor's Danlois syndromes, which are a group of nective
Speaker 1: tissue disorders, which basically means that there's something wrong either
Speaker 1: with your with your collagen or the different components that
Speaker 1: make up your connective tissue, or with the way that
Speaker 1: your connective tissue works in your body, so people can
Speaker 1: present with different symptoms and signs of these conditions, and
Speaker 1: oftentimes we can visually see that people that have hypermobility,
Speaker 1: meaning that their joints are very bendy. So interestingly, persistent
Speaker 1: pain is something that we really see a lot people
Speaker 1: who have e d S. They tend to accumulate so
Speaker 1: many injuries and have so much pain coming into their
Speaker 1: nervous system that the nervous system itself starts to become
Speaker 1: part of the problem, and the nervous system no longer
Speaker 1: processes pain signals appropriately. The frequent injuries Kyle had as
Speaker 1: a kid, the continuing persistent pain, the flexibility, all of
Speaker 1: the symptoms Kyle had been showing for years. It just
Speaker 1: took a rig him to notice the fragility of his
Speaker 1: skin to be able to put all the pieces of
Speaker 1: the E d S puzzle together. So how common is
Speaker 1: e d S. It's really hard to say because we
Speaker 1: just changed the classification. For a long time, people said
Speaker 1: that it was one in three thousand to one in
Speaker 1: five thousand people had this condition. A more recent study
Speaker 1: said it's probably more like one in five hundred that
Speaker 1: had hyper mobile e d S. Kyle suffered through nearly
Speaker 1: two decades of pain and confusion that pushed him to
Speaker 1: the brink of giving up and just becoming numb to
Speaker 1: the world. He seemed to always be injured in countless
Speaker 1: casts and walking boots. He was teased because of all
Speaker 1: of the injuries, pushing him to drop out of school.
Speaker 1: He suffered through a scare with a tumor on a
Speaker 1: spine that took one third of his vertebrae with it.
Speaker 1: He pushed through all of these trials and misdiagnoses to
Speaker 1: still have a positive outlook and energy about him. How
Speaker 1: are you so positive? What do you credit the Kyle
Speaker 1: you are today? How have you overcome so much? M hmm.
Speaker 1: It's hard to say exactly why. I think this has
Speaker 1: kind of always been My personality is like very resilient
Speaker 1: and not wanting to give up. And I've always been
Speaker 1: curious as to the wise of the world, and you know,
Speaker 1: why is this happening to me? And what is the
Speaker 1: best explanation for this? And I always wanted to figure
Speaker 1: that out. I feel like that kind of gave me
Speaker 1: the drive to overcome the limitations that these diseases put
Speaker 1: on me. Limitations from his symptoms and stigma from other people,
Speaker 1: something Dr Bluestein is all too familiar with herself, because,
Speaker 1: like Kyle, she struggled with multiple symptoms before also being
Speaker 1: diagnosed with e d S. For me personally, I mean,
Speaker 1: I went through a very low point in my life
Speaker 1: psychologically because nobody believed me, including my own colleagues, and
Speaker 1: I had, you know, people say hurtful things to me,
Speaker 1: and I stopped bleeding in myself, and uh, you know,
Speaker 1: so I know I've been there. Kyle has turned his
Speaker 1: life experiences into action, becoming an advocate for people suffering
Speaker 1: from similar illness and feelings of isolation that he had
Speaker 1: to endure. He's now working with Dr Bluestein to create
Speaker 1: a safe place online through social media so that other
Speaker 1: people's journeys can be easier than his own. It's unrealsome times,
Speaker 1: and I it feels like a fever dream. I still
Speaker 1: kind of can't believe that the things that I'm able
Speaker 1: to do. And to the people that think that social
Speaker 1: media is just social media, it's it's not. When it
Speaker 1: comes to these conditions, doctors often don't listen to us. Unfortunately,
Speaker 1: a lot of the people in the community are gas
Speaker 1: lit and told that a lot of the symptoms are
Speaker 1: on their head and that they're they're not truly experiencing them.
Speaker 1: And so they've started a community on social media, and
Speaker 1: we've been able to have a lot of people in there,
Speaker 1: and people are getting answers and a lot of their
Speaker 1: questions and concerns are being addressed. Social media is a
Speaker 1: lot more than just an app that you scroll on.
Speaker 1: It's a community at this point that we've built. What
Speaker 1: advice would you have for other parents who might find
Speaker 1: themselves in a similar situation. I would say, if it's
Speaker 1: your child, even if it's a young adult, even your
Speaker 1: adult child, be their advocate because they may not know
Speaker 1: how to do it. Speak up, ask questions. Do not
Speaker 1: be afraid because someone may have more medical background and
Speaker 1: education than you do. Because there's something to be a mom,
Speaker 1: a parent, a dad, and you have this gut feeling
Speaker 1: and if you really feel like something's wrong, you've got
Speaker 1: to push and don't make people feel like you're crazy
Speaker 1: or that you're doing anything wrong, because this is I mean,
Speaker 1: this is your child, So don't give up. Keep pushing.
Speaker 1: To find out more information on e d S, visit
Speaker 1: the Eiler's Danlos Society or Eisler's Danlos dot Com, or
Speaker 1: listen to Dr Bluestain's podcast Bendy Bodies with the Hypermobility
Speaker 1: m D wherever you get your podcasts. My name is
Speaker 1: Kyle Thompson and I struggle with a medical mystery for
Speaker 1: almost two decades until I was diagnosed with hypermobile Isiler's
Speaker 1: Danlos syndrome. On the next Symptomatic, Antoinette is constantly battling
Speaker 1: flare ups due to sickle cell disease, but none of
Speaker 1: the treatments and therapies seem to help at all. Something
Speaker 1: else is at work. There are signs where you feel like,
Speaker 1: oh God, you want to die just if you put
Speaker 1: out to misery because the pain is so bad. Antoinette
Speaker 1: struggles with being ostracized by her friends while pushing through
Speaker 1: multiple life threatening trips to the e R hoping to
Speaker 1: find an answer to what's been ailing her. Symptomatic A
Speaker 1: Medical Mystery podcast is an original podcast. I Heart Radio
Speaker 1: are shows hosted by me Lauren Bright Pacheco. Executive producers
Speaker 1: are Matt Romano and myself. Our EP of post production
Speaker 1: is Matt Stillo. Our producers are crra Kaiser and John
Speaker 1: Irwin