Arlen's Journey: Seeking Treatment for Rare Genetic Conditions in the U.S.

In this episode of the Occult Awareness podcast, we sit down with Arlen, who shares her compelling journey through the healthcare system with multiple rare genetic conditions, including Ehlers-Danlos Syndrome (EDS). Arlen's story is a testament to resilience, advocacy, and the challenges faced by those with rare and complex medical conditions.

• Early Symptoms and Misdiagnoses:
  • Arlen’s lifelong battle with various symptoms started in childhood.
  • Initial misdiagnoses and the impact on her daily life and education.
• Living with Ehlers-Danlos Syndrome:
  • Detailed symptoms and the progressive nature of EDS.
  • The impact of EDS on Arlen’s mobility and daily activities.
• Complex Comorbidities:
  • The discovery of additional conditions like myalgic encephalomyelitis (ME), POTS, and others.
  • The interconnectedness of these conditions and their compounded effects on health.
• Navigating Treatment and Care:
  • The struggle to find knowledgeable and compassionate healthcare providers.
  • The importance of a supportive medical team and the role of international healthcare systems.
• Challenges in the Healthcare System Outside of the U.S and in the U.S.:
  • More time spent on patients but Lack of Knowledge in Complex Conditions  
  • Difficulty with getting care in hospital settings without insurance. 
• Personal Advocacy and Community Support:
  • Arlen’s efforts to raise awareness about EDS and related conditions.
  • The significance of community and support networks in managing chronic illnesses.

Transcript

00:00:08:05 - 00:00:26:09

Host

welcome to Occult Awareness for conditions. That is rare newly discovered underfunded. And we are here to raise awareness, bring invisibility to the light and to help us together in this change making community.

00:00:26:13 - 00:00:44:00

Host

And today we have Arlen here to talk about her story. And, you know, a lot of insights into the health system and her, good and bad experiences, I guess. so, yeah, welcome.

00:00:44:02 - 00:00:46:18

Arlen

Thank you. Thank you for having me.

00:00:46:20 - 00:00:59:16

Speaker 1

Yeah. So, I'll start with now with a little bit, visual description, because I know some people might be listening to it and not really know, what

00:00:59:16 - 00:01:11:08

Speaker 1

we, look like or, you know, or some people who have visual, impairment. And so I'm just going to start, I am,

00:01:11:08 - 00:01:22:24

Speaker 1

an Asian woman and I have a short buzzcut, and I do have my pink headphones on.

00:01:23:01 - 00:01:56:21

Speaker 1

I also wear a blue blouse today, with a little bit, decoration on the side of the collar And I also have. Oh, my, my microphone on the left and my mouth piece on the right.I am in a power wheelchair. and I have, basically my I'm, in my apartment, my, background is literally a whole entire classical music like map timeline.

00:01:56:23 - 00:02:07:01

Speaker 1

very cool. So, yeah. I think I'm finished. And, if you want to carry on.

00:02:07:03 - 00:02:37:12

Speaker 2

well, and. I don't even know how to describe how I look, but I'm using answer because of color that is decorated, with red metallic shiny things. And then I have, an orange shirt with a zebra and, living room. All you can see is, really big window with a lot of light. yeah, that's.

00:02:37:14 - 00:02:46:00

Speaker 1

Okay. Yeah. Great. Thank you. And, then we can start maybe with your,

00:02:46:00 - 00:02:49:23

Speaker 1

start of your journey where

00:02:49:23 - 00:03:06:20

Speaker 1

when you had your symptoms. And, how did you get diagnosed with, your genetic conditions and, how things kind of developed.

00:03:06:22 - 00:03:39:13

Speaker 2

well, symptoms. I started having symptoms since I was born. GI symptoms in five shows. I was supposed to be clumsy. I was, I had, muscle weakness. That started getting worse when I got an infection when I was five. I developed really bad fatigue after that, and it never went away. It just got worse.

00:03:39:13 - 00:04:26:24

Speaker 2

Every infection, every, like, every injury made me worse. like, he was progressing with time, but we had no idea wha what was happening. I was never able to to do any, any kind of physical activity, not even going to, to school normally. I was missing 16, maybe seven and 20% off every year. So they had to make like, meetings to see how can she pass to the next race because she's never like she's never coming.

00:04:27:01 - 00:04:53:04

Speaker 2

I was able to do that because I have really grown, like, I was succeeding on on this thing, so I got stop, but I was not there. so. No, the absenteeism was really bad. when I got.

00:04:53:06 - 00:05:04:01

Speaker 2

I got an infection when I was 24. wait, I already have terminal paralysis.

00:05:04:01 - 00:05:22:21

Speaker 2

Like it will last from a few minutes to hours through two hours. But my mom just invited me over to bed and then we just. Just rest. You have a lot of things. Is when it passed. I have pain coming all over my spine to my legs, and I was too weak.

00:05:22:21 - 00:05:59:00

Speaker 2

I couldn't stand them for more. But after resting, you will get better. And I was walking normally again so we never know why. I was truly going on. But I was, Every day is slower, every day having more, clumsiness. And every day, walking ways and having, more G.I symptoms, more, even brain fog.

00:05:59:00 - 00:06:27:14

Speaker 2

But we didn't know the name. a lot of infections and g.i issues, and there was never, an explanation. She was just going to get better next year or next year. This treatment is going to make hair products. the GI issues really stopped me from doing most things, and I was never able to do a physical exercise.

00:06:27:19 - 00:06:39:03

Speaker 2

So with infections, every, every infection after.

00:06:39:05 - 00:07:15:06

Speaker 2

Like after 15, they started to increase my muscle weakness in my legs and my arms in my hands. And the episodes was more, well, it was not every day. So we had no idea what was happening. the answer from the doctor was, was always, always just fatigue. It's just fatigue to. So it's been because she has, electrolytes abnormalities.

00:07:15:06 - 00:07:39:10

Speaker 2

It just goes, like she needs electrolytes, let's say. But it was never clear until I got, I got, cytomegalovirus, Nikki chronic. So I started having episodes of that virus every month.

00:07:39:10 - 00:08:07:01

Speaker 2

I, I had the virus since I was a kid, but then they, they they did blood tests and it showed that it was chronic. It was I was having this the the virus very often every month. So then I had like, flare. from one day to the other, I was living in the forth floor without, without elevator.

00:08:07:06 - 00:08:29:17

Speaker 2

And I was tired every time using the stairs. But I was able to do it. I went to sleep and I woke up. I feel really bad And I was like, oh my God, I have like a flu or something. But I wasn't able to walk down the stairs and I was like, what's going on here? But I'm very, very skinny.

00:08:29:17 - 00:08:55:18

Speaker 2

So it was easy to carry and oh, maybe you're feeling bad right now. You get the fever down, you're going to feel better. That was in the morning. we spent all day outside and we came back with. No, I, I was unable to to use the stairs like I, I was walking was very weak and I wasn't able to use the stairs anymore.

00:08:55:20 - 00:09:13:18

Speaker 2

after that, I, I had like days when I was stronger, but I was never able to do it normally. Anyone, I mean, I needed help, I needed, crutches. I needed to use.

00:09:13:18 - 00:09:51:22

Speaker 2

Something, with the stairs because I wasn't able to do it. Standing with my legs. I, like a year after that, I had another infections go ZIKA from, mosquito bite. Yeah. the infection was really bad. I got a rash all over my my skin. All my body was right in. I started having not only, like, problems in, but my whole body was paralyzed from coming up to the other.

00:09:51:22 - 00:10:20:16

Speaker 2

Like, I was unable to move my face, my arms, my pains, everything. And yeah, the first day we got really scared. But we say, well, let's wait tomorrow. Disease. This is a fever. If you're having seizures of something, something that's best. But now it became chronic. Every day, every day, every few hours I would have another.

00:10:20:18 - 00:10:55:24

Speaker 2

Attack. we went to the hospital, and then I was, I got inpatient for about two weeks. I had a lot of testing they did from, like this. Results that were wrong, but not that you will give an answer on what was happening. They had no idea. And they they started asking for symptoms that I had since I was a baby, like, neurogenic bladder, for example.

00:10:55:24 - 00:11:23:20

Speaker 2

They started asking, do you have any, any time? Do you have a, urinary, or just the urinary, continence? And I was like, yes, every day is a normal day for me. So I was, so they discharged me because they had no idea what was going on. But the report was really good explaining, how their weakness was happening.

00:11:23:22 - 00:12:00:11

Speaker 2

so they, they say, we know something's wrong here, something neurologic. Something's happening. We don't know what's happening. It's like a bigger hospital or something to see if they can find it is, genetic because there are so many symptoms that are not new that when this one are, getting worse, I. I went out of the hospital with a wheelchair thinking that it was temporary, but it was not.

00:12:00:13 - 00:12:28:22

Speaker 2

I went home in a few days after that. I was we were calling doctors and everyone sending their reports. Everything. they have no idea. No one has any idea. And I. Maybe she needs to go to another city. Something. I don't know. What is it? Let me try to, I come from Venezuela, so we speak Spanish, and I say, let me try to Google my files.

00:12:28:22 - 00:12:53:08

Speaker 2

My million symptoms in English. Maybe I find something mean. Google has a lot of information, but I don't know why. I never find this in Spanish. But maybe. Let's put five words in English. It was 10pm when I found it was Ehlers Danlos syndrome rooms and it was like reading my whole story. And I remember that when I was 10 years old.

00:12:53:08 - 00:13:00:20

Speaker 2

So this was, I was 30 this month or when I was staying. I went to the,

00:13:00:20 - 00:13:15:22

Speaker 2

doctor because I was having at least three injuries at the same time and doing nothing, just like walking to the bathroom was like, it has no sign. And the doctors, they said she has Ehlers Danlos. That's why it is so flexible.

00:13:15:22 - 00:13:43:12

Speaker 2

And she's going to have injuries. What? She should work at the circus because she can become a millionaire if she do that. And my mom don't not. She's very sick all the time. And she, she gets injured just by going to the bathroom. How is she going to work in the circus? You're this great. Well, we never took it seriously until I read that in English.

00:13:43:18 - 00:14:17:24

Speaker 2

When I read that. So Ehlers-Danlos is connected to this disease, and I was like, finding ten conditions. at least I have the symptoms of each one of them. But, yeah, mast cell and CCI, cervical instability and I was like, There's no chance, like, you have so many diseases and no one knew I had all of these. But, you know, there's I mean, they are even saying the same words like the same the same complaints I have with the doctors.

00:14:18:01 - 00:14:43:00

Speaker 2

This is here. I went to, cardiologist to, to check for POTS and he said it is too obvious. I don't know why you never got diagnosed before. This is like this. You was. You were a kid and Ehlers Danlos,, like, of course, Why didn't you have a diagnosis? And I was like, I don't know, ask the doctors.

00:14:43:02 - 00:15:11:12

Speaker 2

Since after that that we realized there were. There were no doctors in the whole country. You know, anything? it's like going to Argentina by myself, you know, wheelchair, still see if I could find, any treatment if they found really bad gastroparesis and tried to put, to, I think the it made me so much weaker

00:15:11:12 - 00:15:39:07

Speaker 2

My legs became weaker. It was. It seems he has no legs using but something with blood flow or something, because the tube in my abdomen made me so weak. And he never walk, they were doing was ask him what? Nothing was going on. my symptoms. Why is it that I cannot stay up? Why is that? I cannot sit down?

00:15:39:09 - 00:15:59:13

Speaker 2

So he didn't is kind that I don't know. Is it's too weird not being able to sit down. Yeah. And they have no idea. I. I say no, I'm leaving this country. He has no sense to keep trying here because they are.

00:15:59:15 - 00:16:29:15

Speaker 2

They are not finding anything. then went back to Venezuela, went to Colombia a few months after that, and, I met, with the main geneticist in the country. Is the president of the genetic is like, the biggest geneticist of the whole country is here. She made me is. I have never had a patient with, Alexander syndrome, but I know what is it?

00:16:29:17 - 00:17:02:19

Speaker 2

I'm going to read all of these, and, let's have another appointment next week. And, I'm going to check your medical records and we will see what what to do. she say she gave me these these, reports and, she has just too many comorbidities, is too complex. It is a really severe case of there Ehlers Danlos , and we don't have any doctor this specialize in these.

00:17:02:19 - 00:17:34:02

Speaker 2

We don't have any. She don't even this her for any of her conditions. We can only do this that we never show a lot of cells. And she needs she needs to do I do evaluate her spinal for that neurological symptoms. And there's a lot of things she needs to go to united states. And I just say I was told as a joke

 I wasn't just to want one appointment.

00:17:34:04 - 00:18:12:21

Speaker 2

That was all. But she was really fine. and she says it's it's not ethical to tell you that I want to try and and gonnastart ordering testing that I know. Have they had no relationship with your symptoms? And I'm saying. And you it's cruel not to tell you where you really need to go. It's like. No, and so I fall, I got, I got a visa, and I came to the United side thinking that it was easier to see, like.

00:18:12:23 - 00:18:46:20

Speaker 2

Yeah, I go to the doctor, they find this dog, give me whatever pills I need. Maybe a surgery, maybe something. it became so complex like that, I started. And having finding one. This is after the other. After the other? Like, everything I was being this for, it will come back positive. Like gastroparesis to mast cell and in primary immunodeficiency.

00:18:46:22 - 00:19:03:24

Speaker 2

them, it's not just gastroparesis. So overall will be signature allergenic bladder CCI, tethered cord, and then vascular compressions. there's more but those are like the main. Yeah. Yeah.

00:19:03:24 - 00:19:23:17

Speaker 2

the didn't have insurance at the time. no one explained to me, that how the system works. It should just be discharged. I was discharged so many times vomited a lot

00:19:23:19 - 00:19:43:00

Speaker 2

Like liters of blood. I wouldn’t know what’s going on. Just like some vomit. It was like, are you crazy? Just these liters of blood that was send me home. Yeah.

00:19:43:02 - 00:19:58:18

Speaker 1

You're ruining the, Sorry. You already went to the doctors that you thought that, here, that it can help you, right? So that means, like, you have specific doctor that already specialized and knowing eds.

00:19:58:20 - 00:20:30:06

Speaker 2

Now, this now. Yes. I first went to the to doctor, to a new job to doctor Bolognese and, they never take case that doesn't have an insurance that they just don't. They may even email me that. You don't. That's it. it's just a lot of money in what they found really should be instability. We they knew that this test was massive.

00:20:30:06 - 00:21:06:07

Speaker 2

Really painful, but amazing that the cervix, the invest, the cervical traction test. Yeah. but the test is better than just the up right, of what they find and the like. But but I then had the surgery, they send me to have MALS surgery. I was like, rather to the hospital to get MALS surgery because that was at least they cover as an emergency.

00:21:06:09 - 00:21:45:03

Speaker 2

That was something a little weird. And the doctor never charged me. the even the nurses say about all the patients with instability get the instability corrected first before MALS Everyone. No, it was for me. Yes, but they told me that. And I was like, well, I don't know. They sent me here and never asked, and, for me.

00:21:45:05 - 00:22:25:08

Speaker 2

I was saying, this is my MALS is not causing my GI symptoms, They from either. both from my lower belly and from my neck. It goes to take away my collar Then I start vomiting, even without eating. So it's it's very much related to itself. it's really that, then I got, to see Petra she diagnosed with that, tethered cord, but she said, without without injuries.

00:22:25:08 - 00:23:00:11

Speaker 2

I was unable also to start the surgery. she she made me go back, you know, like, ten months later and made a long, longer, like, more testing, more evaluations. and she's I, I need a 24 seven, a 24 seven caregiver to have like, to interview. She made a lot of physical testing, a clinical, read all those, like, medical records.

00:23:00:11 - 00:23:32:05

Speaker 2

I don't know how what she really did in she's I, I can see there that you cannot have a surgery without having this, something that has to be a family member because no one is going to be a 24 seven caregiver. And unless you pay for that. And then, But I was alone. My mom is in, another country.

00:23:32:05 - 00:24:06:16

Speaker 2

She doesn't have a visa. we tried to bring. My mom was just really hard Yeah. you always be trying to ask me what's happening. The too hot and the other testing like, be, aware of what's going on. She also speak with my geneticist. Was square and jump and some Clair Was the first doctor who actually connected the dots.

00:24:06:18 - 00:24:33:22

Speaker 2

Yeah, this is the biggest of things because she said in five minutes, well, I mean, you have this this this, this and you need at least three surgeries. And I was like, you that in five minutes it's she's in case we need to test you. I know. Yeah. And. Well, we have no chance to bring my mom, which I will keep.

00:24:33:24 - 00:25:06:04

Speaker 2

speaking with Claire, speaking with me, and making sure, my symptoms were promising. so when she say I need it for 24, seven caregivers, she's. I had no no medical help or have been an improvement. bladder. neurogenic bladder and neurogenic bowel symptoms, did that too severe to fatigue? any.

00:25:06:06 - 00:25:38:16

Speaker 2

Any improvement from the surgery and she said have less being less, muscle weakness and maybe. Well, nothing else after it. we spent, like, a day of trying to bring my mom as this is just. You really have to get the visa to work. Yeah, and she had a lot of patients having the other surgery, which is.

00:25:38:16 - 00:26:15:15

Speaker 2

Yeah. some of the patients had severe CCI, and all of the patients came to operate it. had they did the core surgery before CCI got was better after the surgery, like they got two symptoms to relieve maybe pain the lower back or something like that, you know, but it got so much worse from everything. Well, I also didn't know the neurological symptoms were already coming from the CCI on.

00:26:15:15 - 00:26:43:11

Speaker 2

Not from the tethered cord because such I was planned on schedule for surgery because I found, a person who also wanted to be a caregiver or to pay for one just for me to have the surgery. I was scheduled for the surgery, and she had one patient that she says don't care. So it's so similar to you.

00:26:43:13 - 00:26:48:24

Speaker 2

And, the place got so much worse after surgery.

00:26:49:01 - 00:26:51:10

Speaker 1

What time was that?

00:26:51:12 - 00:26:58:00

Speaker 2

October. October 2023.

00:26:58:02 - 00:27:00:21

Speaker 1

I got my surgery March.

00:27:00:23 - 00:27:07:14

Speaker 2

Yeah. So I was wondering because before that.

00:27:07:16 - 00:27:13:17

Speaker 1

and I mean, I to get worse, it's just nothing was coming back. I mean.

00:27:13:19 - 00:27:17:03

Speaker 2

If she I got worse.

00:27:17:05 - 00:27:38:10

Speaker 1

Yeah, but if she think that, you know, like, she never seen anyone, worse than your case or whatever. I don't know how she think about my quadriparesis At the time, the hospital, I was using those, like, competent because I can't really do anything with my arm.

00:27:38:12 - 00:28:09:17

Speaker 2

She say that is, no, I don't that is, That she thinks is like this. One of my organs, whatever is left is going to stop working because I to have a lot of symptoms on the inside. Yeah, that unless you are, professional, like, especially you, we will never know that. Or just glucose or your dosing goes and, people will never relate to it.

00:28:09:17 - 00:28:11:08

Speaker 2

She goes.

00:28:11:10 - 00:28:19:09

Speaker 1

She didn't know at the time that my glucose is so off because I wasn't having a Dexcom. You know, I.

00:28:19:12 - 00:28:21:02

Speaker 2

Really don't have the the.

00:28:21:06 - 00:28:23:11

Speaker 1

No. But yeah.

00:28:23:13 - 00:28:47:19

Speaker 2

Now I knew it. But because my at that time, I mean I don't have the it's expired. So I don't have it right now but I have at least but like half of the days. But it's not just your episodes. Most of the day is bad Yeah. Like it can be whole night waking me all the. Yeah I think.

00:28:47:19 - 00:28:55:13

Speaker 2

Yeah. Or think works for a few minutes and.

00:28:55:15 - 00:29:32:17

Speaker 2

And then like oh like, oh yeah. so and you say it was through risky. I mean, on oxygen since 2022, in this 2000, 21, actually, but I've been increasing the dose, because it's just not working. If it's less than six liters, it doesn't do anything. Yeah.

00:29:32:19 - 00:30:11:20

Speaker 1

Exactly the same. Exactly the same. I, I was slowly tapering up to six liter and then I would, I think when I talked to someone else and they're like I, they know someone getting two liters. Like I was like I don't know, like I just keeps like thinking, you know the stats. Yeah. I don't, I don't have cell, but my, my, even this ventilator and when I come until in 2023 when they had to have someone to believe that this thing is real.

00:30:11:22 - 00:30:43:18

Speaker 2

Yeah, they I mean, sometimes I'm having really bad levels and I don't notice unless I measure it in. So they the doctors. It's hard for them to believe that something's happening. and sometimes you feel bad before the the measures. but. Yeah, but, I can't, I can't on purpose. It's just all going, right now, I, I used to six to a liter, sometimes nine.

00:30:43:20 - 00:31:19:19

Speaker 2

And she knows because I went to the appointment she made me go and she, she said like she was watching the oxygen, my TV, they were I world and they were. Well, they were. I'm well, But over the chair when I breathe like everything. And she she was listening to everything. She gave me this report. She can have the surgery me for, having the CCI surgery first because I think your symptoms for the legs and everything are not coming from that.

00:31:19:21 - 00:31:47:16

Speaker 2

And therefore, it's causing a lot of pain. And I. Do already have it. I mentioned your bladder and and your problem, I don't think is going to get because it's been so long. Yeah, but the other symptoms are not coming from that. She made me lie them on the table, flat table. You tried to wash my legs, my arms, and, I couldn't do anything.

00:31:47:16 - 00:32:02:01

Speaker 2

And and I said, oh, well, if you if you put me in this position, I can do it. Yeah. Big. And it was a no, I can, I can move my arm if I'm lying in this position. Thoughts.

00:32:02:04 - 00:32:05:14

Speaker 1

Right. Yeah. Like like this.

00:32:05:16 - 00:32:07:00

Speaker 2

Resolution.

00:32:07:02 - 00:32:15:05

Speaker 1

Yeah. Yeah. You know if you go back down and then my voice even gets smaller and then like, you know.

00:32:15:07 - 00:32:26:12

Speaker 2

Is you even know there's a point where do the lucid. So you can't even speak or, and do you see now that she's different.

00:32:26:12 - 00:32:37:06

Speaker 2

can't I mean, this is too risky. You can have this one day after that. I don't that way. And then the problem with the CCI is that the doctor.

00:32:37:07 - 00:33:08:02

Speaker 2

This. I cannot do the surgery always. I, I get on TPN. Because I have cyclic vomiting more than 30 times per day. I vomit is too much and it's impossible to have a fusion. Now this might not be obvious to see the C7 at least. With their able mesmer they. I'm going to break the hardware and I'm going to break myself.

00:33:08:03 - 00:33:09:00

Speaker 2

I'm.

00:33:09:02 - 00:33:10:05

Speaker 1

Yeah.

00:33:10:07 - 00:33:52:13

Speaker 2

So it's also I don't have and nutrition my body to recover from this okay. Surgery can make me lose my way maybe weaker because it's a normal effect of the surgery. but to have the different. There's no hospital that that will give you, you know, as you have a permanent home healthcare. And I don't have, I'm leaving hotels and Airbnbs and right now saying, and the house of the family that literally rescue me in there at the airport, I was alone they went there to rescue me.

00:33:52:13 - 00:34:24:08

Speaker 2

We don't know yet at all. what is this, temporary. And I can, have the home, dear. Here. I don't have, I'm not a citizen. I don't have benefits in the whole country when I have the Medicaid. Yeah, I have the home. This is a place to fix it. And we don't know how long it's going to take for ventilation to make really somewhere, because there's been a lot of years for me.

00:34:24:08 - 00:34:47:13

Speaker 2

Vomiting every day. my bones are really fragile, and I have osteoporosis. I really have bones. So there's a still chains, but, I need to kind of hurry in having a permanent place so I can start with the treatments.

00:34:47:15 - 00:35:01:08

Speaker 1

So now, are you, at this point, I think you update me about the last visit. so you're able to get the TPN and or.

00:35:01:10 - 00:35:34:07

Speaker 2

I'm not. Yeah, because to get ATP, VPN, you need to have a family called and home care. Yeah. You don't have home care. They will not, start the TPN because they need they need to, to have you, like a nurse going to your home to, to pull the, the new or whatever. And every week at least, it's like it needs to be weekly.

00:35:34:08 - 00:35:59:06

Speaker 2

needs to be a place where you need to move or needs to be a room like, oh, I'm going to it's for you guys medically and. Killing everything. Perfect. And you need to have the services so you can start. And I don't have that right now. If I go to the hospital, they will treat me either like they will be clear.

00:35:59:06 - 00:36:10:04

Speaker 2

I'm telling me the truth because that has to happen. I prefer the, wards. They will. Then we also don't need that, because that's also possible.

00:36:10:06 - 00:36:22:22

Speaker 1

Yeah. And then you said, there was a lot of hospital, like, just kind of send you home at the time. Was that before even you go to see the Petra Klinge

00:36:22:24 - 00:36:26:16

Speaker 2

For the after the after.

00:36:26:20 - 00:36:27:03

Speaker 1

Before?

00:36:27:03 - 00:36:52:19

Speaker 2

And actually I have a reports from the hospital. Oh, we are so sorry. We go and also our surgery seems these like that. I mean my reports are kind of crazy. And the discharge reports I it's like you read that and you're like, I just serious. You're saying she needs surgery or not giving the surgeries necessary?

00:36:52:19 - 00:36:55:08

Speaker 1

but you got the insurance. What time did you get it?

00:36:55:08 - 00:37:02:11

Speaker 2

Now I have the insurance, but the insurance I have is not. Yeah. Doesn't cover home care.

00:37:03:15 - 00:37:09:02

Speaker 2

Like, I can even say for the surgeries if the if the doctor said the insurance.

00:37:09:02 - 00:37:17:06

Speaker 1

So you got the insurance. And I remember you said they are about. You went. Went back to the doctor. Bolognese?

00:37:17:08 - 00:37:17:23

Speaker 2

Yes.

00:37:17:23 - 00:37:21:12

Speaker 1

head is killing me because I was moving too fast. Oh,

00:37:21:12 - 00:37:24:15

Speaker 2

remember you said you had the ICT right?

00:37:24:17 - 00:37:27:07

Speaker 1

Yes. I had to do that in 21.

00:37:27:09 - 00:37:28:21

Speaker 2

Wow.

00:37:28:23 - 00:37:32:06

Speaker 1

And so 2021.

00:37:32:08 - 00:37:40:11

Speaker 2

Yeah. So did you actually get, symptom relief? How did you feel?

00:37:40:13 - 00:37:44:16

Speaker 1

no. After the after the. This. I was worse.

00:37:44:18 - 00:37:50:09

Speaker 2

Yeah. But, before they, I mean, sorry. Drawing the test.

00:37:50:11 - 00:38:23:13

Speaker 1

How we did this. Oh, my God, that this was the best thing ever. The worst and the best. During the test, I. I got a lot of pain in my lower making. My lower back mostly. They brought terrifying bombs in. I drove and it was, 82in. It was a lot. I was taller in. At the beginning we dealt with a little way.

00:38:23:13 - 00:38:55:10

Speaker 1

The improvement was 20%, I think. Like what I was swallowing perfectly with, straw, with that tiny straw. Like eating almost that water and that I show myself when I do that, I can only do it like my low. Yeah. My say it's it's really difficult for me. I choke and I get tired. I'm like, I started doing and I called all week.

00:38:55:10 - 00:39:24:14

Speaker 1

My boss was on my face. Like I get really weak. Like if I was blowing something. the breathing, the oxygen and that, like, every time they were putting more weight, it got better. My vision was so clear that I say, you gave us drugs, right? Because I see, like, too many colors. It's it's like five in the.

00:39:24:14 - 00:39:51:00

Speaker 1

You were laughing at me. and this is real life. That's. Life is normal. This is a room with a lot of life is like, this is a surgery. Like, it's it's. I know it's normal because it's you. Even you don't have any drug. Your system is not in, fluids. That's it, you know. No. It was no, this is impossible.

00:39:51:00 - 00:40:28:17

Speaker 1

Is so different than the the way I see how I perceive it. I see very broadly. Yeah, it's the string theory. they give you, 4 pounds, to, to read about my days and, just. Cool. Yeah, yeah. So you throw the bar, I was so chilled, like I was. I never do this. Like, not even when I was a kid.

00:40:28:17 - 00:40:46:12

Speaker 1

I was unable to do this. How is this possible? What's going on? Are. You should never get this wrong. Something's wrong. I was chill, yeah, I really showed no headaches. Like nothing like I feel.

00:40:46:14 - 00:40:54:07

Speaker 1

To relieve, like, I don't know why my head was breathing. Something like that. No, no.

00:40:54:09 - 00:40:58:06

Speaker 2

I think I know how you feel.

00:40:58:08 - 00:41:11:03

Speaker 1

Because the rest of the time I see, I loosen this. I was sitting for there's like, is there is something here? It was so weird.

00:41:11:05 - 00:41:19:18

Speaker 2

And so like your your diaphragm feels like it was like your diaphragm that was able to move.

00:41:19:20 - 00:41:50:20

Speaker 1

Exactly. I was, breathing really strong, like they they made me. Hello. before and after that they put away before I was, I was doing nothing. Because once you sit me, I do nothing like that. Yeah, well, they put all the way. And I was, like. Lazy.

00:41:50:22 - 00:42:21:09

Speaker 1

It was just incredible. My legs were weaker. Yes. And I had a lot of pain in my lower back because of that. There. But most of the symptoms got better. Most of my symptoms got really, really better. Yeah. I still probably up like I have nausea all the time. It was gone wrong.

00:42:21:11 - 00:42:31:21

Speaker 1

I don't feel it really quite so much. Is this where how is this happening. Which I do, yes, but I can feel it. That was.

00:42:31:23 - 00:42:44:09

Speaker 2

Yeah. So did did he diagnose you anything? It was like clear. What exactly is wrong besides CCI. So, you know, like.

00:42:44:11 - 00:43:25:08

Speaker 1

Theyr diagnosed me with severe CCI, they diagnose eagle syndrome. I don't know. They gave me the measurements and the, the difference I remember was like, I think I had a fever. Comes on 42 to 70. Some view was to wash the difference. from with the with the way down the window. there's something they call the rebound of the symptoms when you when they take off the.

00:43:25:10 - 00:44:02:07

Speaker 1

Yes. Then. Yes. The halo Yeah. They think, halo I have no idea before I got this is when they do the they do call their way and then like the head I you still have connected that the the talk to your brain. What do you have any way like I literally I was sitting straight and steady and I fall down like an accordion and they say, oh, it's a human accordion.

00:44:02:09 - 00:44:29:08

Speaker 1

That's what that is. Wow. And I was like, it's not funny. But the way back they were like, no, that's the screen. It's just now it's like, I don't know, like something to ask for. We were doing the best. That's all there was I. No, please put it back. What is that? I wasn't able to like this moment like this and unable to.

00:44:29:10 - 00:44:42:07

Speaker 1

I know they had to lay me down and they did the rest of the stop line, though, because I was literally melting. Yeah, I had no collar.

00:44:42:09 - 00:44:47:02

Speaker 2

they didn't put a collar back on or you haven't already had a collar.

00:44:47:04 - 00:44:55:14

Speaker 1

Yeah. No, they put it, they put it back and in the back. But when I had it, they called. This was without a collar.

00:44:55:16 - 00:44:58:19

Speaker 2

Yeah.

00:44:58:21 - 00:45:02:03

Speaker 1

I guess we are going to put your neck.

00:45:02:05 - 00:45:11:06

Speaker 2

Yeah. I thought they would put. I thought they would put the collar back on, then released away.

00:45:11:08 - 00:45:29:01

Speaker 1

They show this, but I think they need to see the change, I guess. I mean, I don't know, I think that was so brutal. I feel so bad. I was like, please put the waiver. You know, we can't do that and say.

00:45:29:03 - 00:45:43:06

Speaker 2

Yeah, I literally had people question, why do they just do the test if they know that you are positive for everything and then they don't really do anything afterwards? You know, to me, you know.

00:45:43:08 - 00:45:44:14

Speaker 1

This.

00:45:44:16 - 00:45:45:20

Speaker 2

Yeah.

00:45:45:22 - 00:45:59:10

Speaker 1

Yes. And it's not just for me. I mean so many people. Yeah. 2000. They never had surgery. Some people did the surgery immediately. The very lucky ones get the surgery.

00:45:59:10 - 00:46:28:01

Speaker 2

I was actually worry about that. I that's why I didn't go through the January I already scheduled January 4th, for, for the act. But, Doctor Henderson was like, you already know. You're so pathologically, like, so wrong. Like, why wouldn't you need, like, a test to tell you. And that's why he said, but I feel like I wouldn't be able to recover.

00:46:28:02 - 00:46:44:23

Speaker 2

That's the kind of feeling after, like, they put back. And then now be, like, in the O.R.. I would not have a choice. But being, like, a stabbed all the way down, you know what I mean? Like, I don't know. It's it might be a good.

00:46:44:24 - 00:47:11:22

Speaker 1

There's. Yes, I think it's good, but I'm not sure if it's right. If you're not doing the surgery immediately. Because I think they can even stretch your tissues. I grow about three inches. I mean, they can. I don't know what they did. What I went out of did this, and I became weaker permanently after that. I never got better after that.

00:47:11:22 - 00:47:21:22

Speaker 1

This because I have about surgery but not I. I became weak, so I'm not sure if something specifically.

00:47:21:24 - 00:47:59:05

Speaker 2

Like instantly after the surgery. I mean, after the surgery means that after the test, Yeah. This is something I feel very hesitant because the community, usually on Facebook, if you see about CCI and this stuff that and talked specifically about it, but they do have a lot of people, really prone on this kind of test and they think that there's nothing going to happen.

00:47:59:05 - 00:48:11:01

Speaker 2

I even got so encouraged was some who already had some hardware and and did the tests.

00:48:11:03 - 00:48:37:16

Speaker 2

And they end up being they said it. it's just some ripa's symptoms. And then I got better. It's fine, but I feel like it was not. in my case, I can just imagine that it will be pretty bad. like what you said. Weaker or in a sense, like, it's too much, right? Symptoms.

00:48:37:18 - 00:48:59:17

Speaker 1

It's. I don't know if it's just. I mean, the reference is supposed to last a few minutes and then you get better. But right now, I have problems even getting the ultra right, because when I when you try to do the operation. So, more with my head, I immediately start trembling. Oh my lord. So they can they can do actually.

00:48:59:23 - 00:49:07:20

Speaker 1

So I have to like, do like this to get it's not the right upright like like you used to do before.

00:49:07:22 - 00:49:08:16

Speaker 2

Yeah.

00:49:08:18 - 00:49:39:17

Speaker 1

Like I was doing the opera before that is. And was painful of it. So silly. But I was able to do it. Now it's. I so my whole body trembles when you try to, to to bend my neck. So all the features are different and I, I never went off the oxygen. I mean there are so many things of change.

00:49:39:19 - 00:50:08:02

Speaker 1

I'm not sure how much is related to use the progress of the disease or the test, but I really immediately got worse in the same day, my mom was really scared because I was like, I was fainting nonstop. Same thing for three days after that as well. Now it's just going to get better. I got better from that, but not the rest of the symptoms.

00:50:08:04 - 00:50:22:13

Speaker 1

Yeah. So they they do what we do that we start doing surgery. Right. Because we are doing surgery. You are folding the tissue so that you should not get stretched because it's literally stretched you.

00:50:22:13 - 00:50:26:05

Speaker 2

Yeah. Well. I don't.

00:50:26:07 - 00:50:26:21

Speaker 1

Just.

00:50:26:23 - 00:51:03:18

Speaker 2

Yeah, I don't understand why do you have to stretch that far to see the improvement, to see it? I mean, of course, for you to also feel it. Right, but are like, oh, I said I could try it out, but no, that's like you pulling the tissue, stretched it and they are going to go back to the normal, like, you know, like once you if you, I don't know if you had that kind of, the MALS surgery that you also had like, hypotrophic, like a, it.

00:51:03:20 - 00:51:04:08

Speaker 1

Or, you.

00:51:04:08 - 00:51:09:22

Speaker 2

Know, those like meniscus stretch and the fell or something and they don't go back.

00:51:09:22 - 00:51:11:13

Speaker 2

So that's kind of where I.

00:51:11:13 - 00:51:13:04

Speaker 1

Think they never go back. Yes. Yeah.

00:51:13:04 - 00:51:21:05

Speaker 2

Yeah. I think that you're right. Like about those soft tissues that everything that stretched out.

00:51:21:07 - 00:51:50:05

Speaker 1

Right. Yeah. So if you hold it in like I were, we hold it and you somehow can't like, the tissue can stay steady. But you are not following the tissue. The tissue is. Yes. Yeah. So weak. Fragile. So I, I never go there. And I do know patients with experiences like these. Like I got so much worse. I'm not getting any safety.

00:51:50:05 - 00:52:13:16

Speaker 1

Everything. I was so strong and and then there are others this like what I do. I need to get another one. If I got one that's near. This is a really bad sense. I don't want it. so, I don't consider whether there has to be a reason no one else is doing the test.

00:52:13:18 - 00:52:32:20

Speaker 2

Well, the only thing is just for them to do, upright MRI. Right. Like flexion extension and then to see. So they have measurements. So they are using the measurements to say oh you already pathological. Yeah. Don't, don't, don't need a stretcher.

00:52:32:22 - 00:52:35:05

Speaker 1

And the clinical testing as if. Yeah.

00:52:35:05 - 00:53:01:21

Speaker 2

Like yeah I, I, I actually that that's the one thing that I think Doctor Henderson to understand why they have to do that again. And also I received emails about, you can always find other surgeons. They will do this. they will do the surgery without the test. but then he promotes it in a way that I saw that in a

00:53:01:21 - 00:53:02:16

Speaker 2

interview.

00:53:02:18 - 00:53:45:19

Speaker 2

And then they proudly talked about the, the, questionnaire. yeah. Like a really long questionnaire. And then they also proudly thinking that, you know, if you don't take the tests. Right. I just don't know, like, maybe not sick enough, I, I was like, so why, like, you know, like us or seems like you're scared of, like, you know, that the result is not, you know, good enough for them to say that also your surgery, that that actually made me feel like I wanted to take the test.

00:53:45:19 - 00:54:01:15

Speaker 2

I feel like, you know, don't want a pure doubt, you know, I don't know how you first find with startup colonies. I know somewhere else is doing the tests as well. Barcelona. if I'm right.

00:54:01:17 - 00:54:33:15

Speaker 1

yes, but this is copying Doctor Bologneses. He started this year. he's in doctor already. So Doctor Bolognese created that, so the copy that's happening in Barcelona, I don't know how exact is the copy. I'm not sure. I think that doctor is it from the patient's experience, is that the doctor is way different than doctor is that the doctor is really kind?

00:54:33:17 - 00:54:44:08

Speaker 1

compassionate? I don't know what's the difference with the testing? I will have to us. Yeah. Patients about the testing.

00:54:44:10 - 00:54:50:22

Speaker 2

Oh, so you don't think that he is really that it caring that?

00:54:50:22 - 00:55:11:18

Speaker 1

Maybe she is doing that. This one. I don't think he's, like I was saying, like, you know, my my legs are I can see my way. It's not a lot, but. And during the test, I was unable to do it. When I say that they still put more weight, and they say, let's see if you, you get more improvement of the symptoms.

00:55:11:18 - 00:55:35:17

Speaker 1

You are having improvement with more weight. And I do, they got better from those symptoms when I was having really bad symptoms of my legs. And my lower back to be was horrific. Yeah, they were stretching my my whole spine. So that's, that's that's kind of.

00:55:35:19 - 00:56:06:14

Speaker 2

I think that's why I lost my, hip movement, you know, I was reclining. They kind of just strapped you a little bit, right? And then I, I just kind of like trying to grab the the next like that. And I still have all the movements on my upper half, and then you just kind of like trying to grab another thing, but then your whole body sort of just like stretch, like, you know, with gravity.

00:56:06:16 - 00:56:29:19

Speaker 2

And then the same day, like evening when I got home and in our second day, it just sit there like within 24 hours been it's like my hip’s gone you know. So I think what you said is exactly make sense. It's like the whole entire spinal cord is being pulled up and if lower is tethered. Yeah.

00:56:29:21 - 00:57:01:17

Speaker 1

Yeah. Sony's you know, l. I think it's even worse that. Yes. Thank you. So vigorously. I like the the response you can get like you can get it. I really. Like, you can know exactly how the surgery would be. Maybe that reduces the time in the surgery. I don't know, but the bad part is that it's I don't agree on this.

00:57:01:19 - 00:57:09:13

Speaker 1

Yeah, they know I had it or they. I was already diagnosed.

00:57:09:15 - 00:57:27:08

Speaker 2

Yeah I think I think it's actually very interesting point. As you know, a lot of patients experienced a lot of gaslighting. Foreign doctors didn't know anything about EDS or these kind of issues. But

00:57:27:08 - 00:57:36:22

Speaker 2

I think it's just in general thinking that, oh, yeah, they just, you know, they just human. They don't really they want to do one good thing, but then they messed up the other.

00:57:36:22 - 00:57:38:17

Speaker 2

And it just it's hard.

00:57:38:17 - 00:57:39:10

Speaker 1

Exactly.

00:57:39:10 - 00:58:06:12

Speaker 1

We need doctors to know how patients the like with the patient like us the patient how what kind of problems they have also, you don't know what's going to happen later. they have a way to rest after that, as I was going to be. Okay, I they can go back to the hospital. I wasn't able to do it because without insurance, the hospital will never take me back.

00:58:06:12 - 00:58:36:19

Speaker 1

At the time. I do not insurance in the whole the hospital for that. Like a rule that I cannot go to the hospital always. I have insurance but I had like my residence came after that. So I think is is cruel in is is is happening to so many patients. Every story is different. What is the creul for so many.

00:58:36:21 - 00:58:41:18

Speaker 2

Yeah. Yeah. So I think that.

00:58:41:20 - 00:58:45:03

Speaker 1

For the injured.

00:58:45:05 - 00:58:46:03

Speaker 2

Yes yes.

00:58:46:05 - 00:58:48:13

Speaker 1

Yes.

00:58:49:23 - 00:58:51:15

Speaker 1

I have to keep certain.

00:58:51:17 - 00:59:18:04

Speaker 2

Yeah, yeah, yeah, I, I was just thinking, like, you know, that that that's so true. Like, with, with them not really having enough of, like, I have to follow up, you know, because so many patients didn't really have the, surgery or didn't have surgeon with him, and I, I think that it's still kind of needs even like from this scientific point.

00:59:18:04 - 00:59:36:08

Speaker 2

Right? They need to know, like how they respond to the rebound symptoms and all that. And yeah, I think it's really wise to to actually conduct the studies. So the follow up as well, you know, you don't they don't do surgery.

00:59:36:08 - 00:59:38:00

Speaker 1

Yes.

00:59:38:02 - 00:59:41:04

Speaker 2

So that's 2021.

00:59:41:04 - 00:59:50:17

Speaker 2

now you finally like, you know, are waiting for getting TPN so you can actually have, have the surgery.

00:59:50:17 - 01:00:16:02

Speaker 1

I think with the TV and like, in after surgery. no, I don't think it, I think I don't think they're going to put more problems then after that, but I agree on that. Like, you know, have this what you're having 30 to 50 permits per day is really dangerous. Yeah. This is subjective. Performance is not just.

01:00:16:04 - 01:00:26:03

Speaker 2

Yeah. Is it just hoping that, the fusion is gonna actually stop the vomiting?

01:00:26:05 - 01:00:54:16

Speaker 1

You don't know exactly how much is the fusion able to help? Because we don't know how much of this. How many? what is the amount of, How much the this CCI is really causing the vomits? Or is it because of the vascular compression? We're not exactly sure. How much is,

01:00:54:18 - 01:01:06:16

Speaker 1

Everything. But the doctors are saying that the spine is worse. The central nervous system is failing, is worse. I, I still don't know me. I still, this. My

01:01:06:16 - 01:01:23:14

Speaker 1

Like, I have the symptoms. So, brainstem compression is 24 seven. I don't have symptoms of vascular conditions. like, I have some this. So maybe this maybe is going to help a lot or stop them.

01:01:24:05 - 01:01:53:02

Speaker 2

Yeah. So it's it's the fact that I think, people don't just don't understand about instance, the compression that much. a and the fact that, people, they always say, oh, yeah. So traumatic brain injury was brain stem, and then these people just died. but we are our life here. And then we are dealing with the aftermath of things or still don't.

01:01:53:03 - 01:02:00:17

Speaker 2

Was this whole entire issues. yeah. So, I still kind of hope for the.

01:02:00:17 - 01:02:05:00

Speaker 2

It's your is your, is your mom

01:02:05:00 - 01:02:08:04

Speaker 2

gonna come?

01:02:08:06 - 01:02:36:07

Speaker 1

My mom, we don't know if she gets be, so, she can come. Sitcoms is like the process of getting up there many times. Like I don't have. I don't have financial resources. That's my biggest problem, because otherwise I will just rent a place and or she's a stay there and have all the treatments that will be actually the proper thing,

01:02:36:09 - 01:03:03:23

Speaker 1

But I, I don't have the this it has to be, if she gets to com or needs, we need to find, affordable, affordable apartment that gives city voucher that accepts that voucher so we can come to home. yeah, the home can approve. Okay. Because I used to have it, but I never got got the home.

01:03:03:23 - 01:03:12:15

Speaker 1

Care to start because I don't have a home. But it was approved. But they were like, okay, where's the home with smoke. Yes.

01:03:12:17 - 01:03:32:17

Speaker 2

That's true. Yeah. So, hopefully these two you like can get a place to stay. That, get more stable. Right. And then then you can have the surgery. That's the best outcome of this.

01:03:32:17 - 01:03:35:03

Speaker 2

when you thinking about all these doctors

01:03:35:03 - 01:03:40:12

Speaker 2

do you have one that in mind that you feel like you're most thankful for?

01:03:40:12 - 01:04:25:18

Speaker 1

Where Franklin. I mean, to she to never be to surgery or a specific treatment. But she's the doctor that's always there to connect the dots, to think in the whole picture, or to listen to all of my symptoms. Anything when they're not happening in the same spot, like I, I could very well. I was having symptoms before and and she believes and she listens and she, she understands because she's just 45 years of experience and she tries to connect me with doctors to, with other doctors.

01:04:25:18 - 01:04:38:14

Speaker 1

So it's I think she's one of the most kind and compassionate person I've ever met. Honestly. It's amazing. It's just amazing.

01:04:38:16 - 01:05:02:21

Speaker 2

Yeah. So, like, I feel like that's comes with experience too, right? So they know. And, so is she almost like your resources? Like, you know, the way that you get all the doctors and the right people to go to and. Yeah, well that's amazing.

01:05:02:21 - 01:05:22:22

Speaker 1

Yeah. That I mean, I have never seen a patient I've seen say anything wrong about it. I'm just it's an amazing first module. Something amazing. Doctor. She's still a person. At the same time of being a doctor. And that doesn't happen most of the time.

01:05:22:24 - 01:05:24:00

Speaker 2

Yeah.

01:05:24:02 - 01:05:43:13

Speaker 1

So it's it's really, really good a good person. She's saying, I wish I could do all the treatments. I mean, I try because I, I'm not legally. Yes. Right. I cannot do it. But. Yes. Amazing. Awesome awesome.

01:05:43:13 - 01:05:50:10

Speaker 2

What is one thing that I feel like it's quite different than where you from?

01:05:50:10 - 01:05:52:24

Speaker 2

Or, you know, like where you from actually,

01:05:52:24 - 01:06:30:11

Speaker 1

Well, yeah. There is no doctor. Right? Only if there there's not even the medications. I think that they don't even exist in my country. Right. But, Many of the doctors, doctors willing to research, to read, to even just you can send them, like, just send them, please research about this. And they would do it right to understand and help you and say, oh, God, that's going to help me to have other patients.

01:06:30:13 - 01:07:02:18

Speaker 1

That's easier to find. Yeah, yeah. That like they are is more common there that you. Yeah, that there's a lot of doctors are too busy to do anything to even listen to a patient. So they, they have five minutes, 20 minutes. That's all. Doctors there. They will. Give you hours of appointments, extra appointments. they will give, a little bit more.

01:07:02:20 - 01:07:35:12

Speaker 1

so always more information about, like, they are more compassionate. But as I, there's no resources. There's no. But she is there's not of their knowledge about this. Yeah. Fortunately I can not use that. This doesn't work anymore for me. Yeah. Well, that that's something that they've been doing. Try to understand. So it's not only because they want to make you feel better, but because they want to help it.

01:07:35:14 - 01:08:01:06

Speaker 1

in a scientific way, too. It's it's always that's what I mean here. The doctors are too far from each other. Many of them don't even communicate with each other. It's for the least we have the doctors. At least we have the medication. So we have different machines. We have researchers. Yeah. They exist. It's really high. It's very expensive for access.

01:08:01:08 - 01:08:28:14

Speaker 1

It exists. If you go to another country and you get care for 1 or 2 diseases, if you have 15, do it. Do done. what are you going to do? There's a coverage for the medication side. They, all side. So you have to pay for them thousands of dollars every month just for the medication. You never get access.

01:08:28:16 - 01:08:50:12

Speaker 1

the doctors are, out of pocket. All of it. You doctors to go out of pocket. It's. It's a really difficult country, but it's the only country that's at least offers something. just to be more affordable.

01:08:50:14 - 01:08:52:18

Speaker 2

Yeah.

01:08:52:20 - 01:08:54:23

Speaker 1

Oh.

01:08:55:00 - 01:09:24:16

Speaker 2

That's. Yeah, that that's so unfortunate. but I feel like, you know, I, to me, it just reminds me of, like, some, some of my home experiences, you know, like, the doctors sometimes don't really know, but, yeah, I feel like at least they are compassionate enough. that's why the first thing when you talk about, like, you know, when you start having these things issues.

01:09:24:16 - 01:09:43:08

Speaker 2

And I was very surprised because they did not, have the machine for your spinal cord stuff. And then or they said they don't have the right machine. I was like, wow, they will listen to it. And they will think that it will. You really have a problem then you need to take care of it

01:09:43:08 - 01:09:58:13

Speaker 2

I definitely appreciate those a lot. I feel like they need to have some other mixed ground people like doctors here have a little more time for each complex patient.

01:09:58:15 - 01:10:02:24

Speaker 1

make sure they are ready.

01:10:03:01 - 01:10:06:02

Speaker 2

yeah. So. Well,

01:10:06:02 - 01:10:11:00

Speaker 2

I really appreciate like, this is not our first time had the conversation.

01:10:11:02 - 01:10:39:17

Speaker 2

And I just feel like the first time, we we talked and it was really great to, you know, see how almost feel like it just seems like how smart you also are, like, you know, with all these conditions, that and the understanding of it and, I mean, of course, we become our own doctor after a while.

01:10:39:19 - 01:10:40:16

Speaker 2

Yeah.

01:10:40:18 - 01:10:48:24

Speaker 1

Yes. So, no. Thank you. You're amazing. This is this is an amazing project for me.

01:10:48:24 - 01:10:54:04

Speaker 1

really overwhelming. I mean, in a good way.

01:10:54:06 - 01:10:55:06

Speaker 2

Okay. Yeah.

01:10:55:06 - 01:10:57:09

Speaker 1

Really good.

01:10:57:11 - 01:11:24:21

Speaker 2

I, I really hope that I can, make some change in some way. So that's why we start from here, right? And we. No, no, we don't really. And was what, just a podcast. But yeah, we start from the small little steps and people hear you guys and hear a group of voice and you know, so that gets stronger.

01:11:24:23 - 01:11:41:04

Speaker 2

And our each individual's, Yeah. And, I really hope that you can get some good care and, you know, and hopefully this is going to be like the start point of getting better.

01:11:41:04 - 01:11:47:16

Speaker 1

so any last thoughts that you want to share with the listener?

01:11:47:18 - 01:12:28:21

Speaker 2

I, I haven't seen. Well, there are a lot of stories still. do listen, in the broadcast and, from my I, there's one of the conditions. I have myalgic encephalomyelitis and ME.. I'm not sure how many people, you know, because I think it's easy to get for it's very common. so, what I know is 31% of Ehlers-Danlos patients, but how many of the spinal cord patients?

01:12:28:23 - 01:12:58:19

Speaker 2

Maybe it's a person. Don't. It's more. I'm not sure. But I think it's interesting to to speak about this. no major topic or, because I see that when the when you get any lot, you know, there's some losses different than when you don't have very large numbers in the home that we have is that the image gets better, gets better with the treatments for how those numbers.

01:12:58:21 - 01:13:01:16

Speaker 2

And there's almost Gaussian beams.

01:13:02:17 - 01:13:18:22

Speaker 2

Mainly I got it symptoms after the infection. when I was five or I was diagnosed when I was an adult. So, you know, we didn't know about I had the symptoms.

01:13:18:24 - 01:13:20:19

Speaker 3

Yeah.

01:13:20:21 - 01:13:29:12

Speaker 2

Where do you. I will, but I do know there are stories about that. Maybe no one is mentioning that.

01:13:29:12 - 01:13:30:18

Speaker 3

But they.

01:13:30:20 - 01:14:10:02

Speaker 2

They do have any. No, no, I think we need to speak more about that because it's part of the it's part of the problems. that means there's no treatment. There's no specific treatment right now. but how much can we improve with the treatments for in those numbers of ways and, what else? if I share my story, you know, we try to share my story until my last breath, just as I did.

01:14:10:04 - 01:14:47:24

Speaker 2

it helps to bring awareness about not only my story, but people see my story. They will think about other stories, and there will be some people saying, oh, I didn't dare to share my story now, because she's doing if that happens or that's for me, that's everything. That's the reason why I share my story. I want to yeah, really believe in awareness and to the others.

01:14:48:01 - 01:14:48:14

Speaker 3

To.

01:14:48:15 - 01:15:20:05

Speaker 2

Encourage others to also share their stories, because I don't think their story of just reading a paper and, medical record is enough. We need this story. So the person telling this story, yeah, I see it. And we will not. If I get better for these surgeries, I want to make, foundation. I do have, pages with expenses.

01:15:20:07 - 01:15:42:02

Speaker 2

Do because it troubling is so expensive, but all of the patients have some financial, problems. But, to get the surgeries, to get the treatments to even get diagnoses sometimes. So I'm hoping to have.

01:15:42:04 - 01:15:42:24

Speaker 3

To.

01:15:43:01 - 01:15:51:11

Speaker 2

That way. Thank you so much for all the work you're doing. Is amazing.

01:15:51:13 - 01:16:19:23

Speaker 1

And yeah, thank you so much for the last words. It's like so important because I also kind of missed the day of May 12th to believe that like in E! Awareness Day, I actually wanted to share a few post, and even real I think maybe like while sharing your story, we can also share some of theirs and hoping that bring more people, with the m e community to hear.

01:16:20:00 - 01:16:46:24

Speaker 1

And this is why a quarter, I'll call it I don't really call it any kind of CCI or something like that. I do believe that there are so many misdiagnosed or undiagnosed cases with all spectrums of diseases, that don't get treatment early on, and it's like become more difficult, to get treatment or even get improvement. So.

01:16:46:24 - 01:17:04:02

Speaker 1

Yeah. thank you so much. And this is really important. I think. and by the way, like if you want to do a foundation, like join us and because we are studying, wanting to vote one.

01:17:04:04 - 01:17:06:17

Speaker 3

Awesome. Yes.

01:17:06:19 - 01:17:08:02

Speaker 2

That would be great.

01:17:08:04 - 01:17:29:15

Speaker 1

Yeah. We. Yes. So that's why this is part of it. we want to share the stories and we want to then connect people with, the right media resource, for more people to listen and to hear us.

01:17:29:15 - 01:17:30:17

Speaker 3

Yes.

01:17:30:19 - 01:17:47:08

Speaker 1

Yes. Thank you so much for joining us. on the show and then, like, talk to all these amazing things about the awareness and, you know, your knowledge about the whole entire, conditions and comorbidities.

01:17:47:08 - 01:17:55:06

Unknown

You.

01:17:56:07 - 01:18:16:12

Speaker 1

If you or someone you know is navigating similar challenges. Remember that support and understanding are out there. Our podcast aims to offer hope and understanding, sheer knowledge for bringing the gap between patients and the broader medical community.

01:18:16:14 - 01:18:48:06

Speaker 1

Don't forget to subscribe to a co awareness for more power for stories and expert discussions. I'm finally done with traveling for a while, so we will get back on track for the following episodes with more stories about occult conditions. Please share this episode to help raise awareness and foster a more compassionate and informed society. Until next time, stay strong and stay informed.