LOS 10 DE SINALOA 🇲🇽🔥 | Política, poder y narco | Elena Chávez y Don Cu 📱

Ajouté : 2026-05-27

[00:00:11]Sir, in the square The power.

[00:00:31]The truths are being shared.

[00:00:34]Some sell illusions, others keep silent about freedoms.

[00:00:41]But there's no makeup or cardboard speeches here.

[00:00:48]Only voices that lay bare.

[00:00:51]The lie of the living room.

[00:00:58]The power of testimony is the light against the disguise.

[00:01:04]When the people are tired of the same old story, no more palace tales or occasional sermons.

[00:01:18]The truth is being sung loudly in this revolution.

[00:01:32]Come on. I invite you to learn about a day in my life living with erythropoietic protoportia (EPP) and the challenges I face. Although it is molecularly proven that I suffer from EPP combined with sistiluria, which causes me to urinate cystine, which is the body's natural defense against ultraviolet rays, this disorder causes me a lot of abdominal pain, as if a red-hot iron were piercing me, leaving a burning ember inside.

[00:02:27]This makes me nauseous, sometimes vomiting, loss of appetite, and I have a lot of trouble eating. This is a problem, as prolonged fasting causes me to experience new portia attacks, pain in my limbs, and neuropathies that produce lower back pain, as well as a lack of sensation in my legs.

[00:02:46]If I expose myself to sunlight, I immediately feel like I'm short- circuiting; I have trouble thinking clearly and expressing my ideas clearly. I feel that there is a disconnect between real time passing and time in my mind. In addition, it gives me severe migraines. I even have absences and seizures. I feel an itch all over my body that drives me crazy. Very painful mouth sores, dizziness, bouts of constipation or diarrhea, and extreme fatigue. My family says I become very aggressive and I'm very sensitive to loud noises.

[00:03:21]My living space must be in complete darkness. Because with just a sliver of sunlight reaching my eyes, I feel a stabbing pain that hurts me and triggers migraines.

[00:03:32]The first images of the video are my refuge in the darkness.

[00:03:37]If I want to watch television, I have to put it in the darkest mode and use dark glasses to cope with the light. I have to use a double blackout curtain, which prevents light from passing through. I have to think about going into the bathroom, as it's quite a challenge for me because it's exposed to sunlight. If I'm going to be in sunlight, I have to wear my UV-protective clothing, gloves, hat, and of course, my sunglasses.

[00:04:07]I show the clothes with UV protection, my long-sleeved shirt, long-sleeved t-shirt, glasses, hat and gloves, as well as cream for my whole body, also with sun protection.

[00:04:20]Here you will find the medications, glucose solution, infusion pump, IV lines and everything necessary to insert an IV.

[00:04:29]The problem is the phlebitis that comes later due to the irritating effect of so much sugar, and the benefits are very short- term. I hope this short video can give you an idea of ​​what it's like to experience a crisis day inside my body.

[00:05:02]Elenita, welcome to your program.

[00:05:05]How are you, Arturo? Good afternoon to you, and to our Friday friends.

[00:05:13]And well, what an introduction. Well, since it's Porphyria Awareness Month, I decided to share a little bit about what it's like to live a day with this challenge that God sent me.

[00:05:29]Wow, isn't it? Well, now that I was looking at it, I even saw the items you use for living, right? Well, to try to have the best quality of life. That's what I felt, the truth is it was like something ran through my body because, well, I know you, I love you, we love each other, we love each other, well, we love each other, but well, I love you, it hurts me to know that you're like this and I think about so many people who are suffering the same thing, who have this very rare, little-known disease and that you are making it visible with a tremendous struggle because they do n't help, I mean, in this country they don't help.

[00:06:31]Each dose of medication for my type of porphyria costs $45,000 on the market and lasts 2 months. So, the government obviously offers no help at all, quite the opposite.

[00:06:48]But anyway, this is so you can see that evil existed before Morena, because Porfiria came before Morena.

[00:06:57]Yes, of course, of course. No, well, yes, the illnesses, well, there, as you rightly say, the illnesses are not caused by Morena, right? In other words, it provokes emotions, etc., right? Because they don't help. I mean, uh, look, I'm just remembering that just a few days ago this lady, uh, Shembun, announced, uh, I don't know how many billions of pesos to increase the number of beds in hospitals and all this, right? Well, with great fanfare, she did it, and when I heard that announcement, I thought, "What a big liar, right?" Because we truly know that hospitals are for fighting and that sick people are suffering, the truth is. So, I didn't believe her, but well, I hope that the people watching are super empathetic and truly people I can't thank enough because if there's one thing about rare diseases, as their name suggests, it's that what you do n't see, you don't know.

[00:08:20]So, in this lack of awareness, people often just ignore it, right? Without really knowing what's going on.

[00:08:31]Hmm. Hey, but what you're saying is something that really impacts me, isn't it? What you don't see, you don't know, but for example, in your case, you who are fighting, well, you and I have known each other for a while now, since I released "King of Cash."

[00:08:50]The number of media outlets has increased... Communication, I don't know, that they have the possibility of giving you a space to talk about porphyria, or does it have to be media outlets like this one?

[00:09:06]Only Channel 1 was kind enough to interview me precisely because February was approaching, which is Rare Disease Month. Uh, I mean, there are two days. Rare Disease Day is in February because, since February is an atypical month due to the number of days it has, they used it as Rare Disease Month. And May 18th, specifically, is Porphyria Awareness Day.

[00:09:33]Oh, listen, well, that's very little then, Arturo.

[00:09:36]Yes, it 's extremely underdiagnosed. Well, imagine how many people there must be. If it took me 50 years to find out what I had, and there are more or less ways to look into things, it's terrible to be thinking that there are people in the mountains or feeling what I 'm feeling and that they can't even get help because the doctors treat you as if it's all in your head and you're crazy.

[00:10:03]Yes, yes, yes, yes.

[00:10:05]So it's still a double challenge.

[00:10:07]Listen, and for example, there are children who might be feeling that pain, that illness, right now. Yes. I mean, because I know it develops over time, right?

[00:10:18]No. Uh, in my case of porphyria, the symptoms start when I'm little. In fact, there's an 8-year-old boy in Peru that I 'm helping get this treatment because he has exactly the same porphyria as me.

[00:10:34]And he's in the mountains of Peru, poor thing.

[00:10:36]Oh, oh, oh.

[00:10:39]Wow. Well, what can I say? I hope that if someone is watching us, or someone who knows, maybe a philanthropic businessman or something, someone who can help by making donations, I don't know, famous soccer players, we have to reach out to people like that so they can help. I think that sometimes help comes from where you least expect it.

[00:11:09]You know, I already had an interview scheduled with Mijares, uh, not so he would donate, just because Diego, with Mijares's stature, I thought he'd have a good pull to raise awareness, but nothing materialized. I also had a verbal agreement with Napoleón, which hasn't happened either, and well, I understand they have things to do and they do n't have time to waste on these kinds of issues.

[00:11:39]No, no, no. Well, that's not wasting time, it's a lack of empathy and solidarity. But hey, thinking that I believe some people can be more sensitive when famous people are involved—we're talking about people who are famous, who have a lot of social impact, uh—and who might be suffering from some kind of illness, if not porphyria, or some other kind of disease. And I just remembered Yolanda Andrade.

[00:12:12]Yes, she has an autoimmune disease.

[00:12:15]Yes, wow. Also very unfortunate. She's a young woman, uh, so maybe she could contribute, I mean, talking with She, and well, she too.

[00:12:26]But then getting the contacts is also hard, don't think it's that easy. Well, you know it's not that easy. I know. Yes, I know.

[00:12:34]The other day I saw you all dressed up there with Anabel. I said, wow, she never wanted to come with us here at the channel. I said dressed up, right? I mean, Anabel interviewed you. I was very happy to see you with her.

[00:12:48]No, what do you think happened? Well, Anabel, somewhat seriously, tells me, "Yes, yes, yes, did you notice? Well, I wasn't even dressed up for the interview, I mean, just normal, like I am right now."

[00:13:01]Yes.

[00:13:02]She was like that, I mean, I was about to go out for my walk for my leg therapy too. Yes.

[00:13:12]And then she calls me and says, "Friend, I want to interview you," I say, " Why?" Yes, for a podcast, uh, etc. When? Right now.

[00:13:24]Hey, what do you think? No, Yes, because I didn't have everything ready, I couldn't even go to my therapy, so I went out there with my Pumas advertising shirt. Puma. So, well, yeah, I mean, it was nice.

[00:13:44]But you're a member now, Pitaya, which isn't just any member. Oh, no, no. I mean, well, I think it was a good program, it really turned out great. I mean, it was more than an interview, it was like, wow, just her and me, right? I mean, just putting ideas together, that's all. And I think you left out a lot of the information you have.

[00:14:11]Well, what happened is that I do n't think I knew, but I think it was an exclusive for Pachu only. So she only uploaded 12 minutes to YouTube, which is what they were telling me. So those who are subscribed to her through Patreon are the ones who had access to the whole interview. Oh, no, I only saw what's uploaded to YouTube.

[00:14:36]No, it was 12 minutes. No, we talked for about an hour and a half.

[00:14:40]Wow.

[00:14:41]Yeah, I mean, it wasn't 12 minutes. Well, I would have finished and gone to do my workout, but it was like an hour and a half. So that's why it says " exclusive interview for Pacho's partners."

[00:14:56]Okay, so here, whenever you want to give an exclusive, feel free to do it, or I'm going to say, oh, yeah, no, for exclusives, through Paton.

[00:15:08]So it was like that, without thinking, I mean, I'm telling you, it wasn't scheduled, it was just quick, no, no, no, no. At this moment, I was like, "But look, I 'm not all dolled up," no, "You look good like this."

[00:15:20]So I said, well, whatever. Anyway, I 'm very natural, I don't overdo anything. No, no, I don't sell an image. You know, when I opened the channel, when you start monetizing, it gives you the option to give exclusive content, and I actually uploaded a poll. With the people who are kind enough to support me, asking if they wanted me to upload something exclusive or if they agreed that we should all have access to all the information, because on top of helping me, I was also being so picky, which seemed kind of tacky.

[00:15:58]So, we agreed that all the information would be for everyone, and whoever wants to contribute is welcome.

[00:16:06]Ah, look, that's great. Yes, but I think Patreon is working.

[00:16:12]Everyone's already involved with Patreon. Look, we have to explain this because they're listening and watching us. Uh, what Arturo says is really important, because those of us who are doing some kind of show on YouTube or X or Facebook, I don't know, on any social network that's popular, sometimes people and the platform itself provide financial support for the research, but they can still censor you, and Patreon doesn't. Yes. And so, I don't know about Patreon, but The thing is, they provide financial support, and that, for example, really allows you to get around, right? In the case of journalists, well, imagine, for example, to do an investigation you have to go to certain places and you have to spend money that sometimes you just don't have, Arturo. That's the reality, isn't it?

[00:17:16]So, if people want to support us, well, welcome, I mean, it's something we're very grateful for, and keep following Elenita on her channel, she's already putting in a lot of content.

[00:17:31]Yes, well, we're getting there. We're almost at 16,000.

[00:17:35]Look, you've already doubled my subscriber count.

[00:17:37]Yes. Oh, no. Well, we're getting there.

[00:17:41]16,000 subscribers, and oh, congratulations, congratulations.

[00:17:45]And well, if they want, if they'd like to listen to me over there, I'm making some videos, sometimes I do a short editorial, etc., but tell them, tell them how to find you so they can look you up.

[00:17:59]Uh, well, I'll tell you He said, " It's... Elena will tell you."

[00:18:05]Elena will tell you. Exactly.

[00:18:06]Elena will tell you. And well, starting in June I'm going to make some small modifications to try to improve it because it's very, very simple, right? I mean, I do n't have a production team. Look, for example, you immediately scold the person who's acting as producer and you tell them to take things down, and well, sometimes the producer put a really ugly artificial intelligence on me. I looked like a ventriloquist, I mean, I said, 'What is that?'

[00:18:35]I mean, leave that to Ms. Shemo.

[00:18:38]No, no, but the important thing is the material you handle and the quality of information you handle, right? Well, look, yes, I have given some information that is mine directly from what I investigate or what my sources give me, but I also give my opinion, I also do this editorial, I mean, I'm adding some things that I find very interesting about images, because sometimes images say more than words.

[00:19:10]Right? You can say a thousand things, and then you see an image and that's it, I mean, just by seeing it you don't need anyone to explain.

[00:19:19]So, I'm including that kind of content, but also, for example, in X, I added a small section called "What Story?" which has been very successful, very successful, because I include stories that have an impact, you know? I mean, not sensationalist, not yellow journalism, nothing like that. I do n't like to go down that road, you know? But yes, above all, stories that raise awareness, right? That's why I say, "What Story?" I mean, and then I can tell you, for example, what can I say? Well, I just posted a few days ago, I don't know, the story of a girl, just look at this, a girl named Rocío. She works, she used to work, at a Spanish company, Acciona, that's the company's name. Spanish.

[00:20:29]This, action to Mexico and one day she felt ill, went to the doctor and came out with a diagnosis of breast cancer.

[00:20:38]Oh my God.

[00:20:39]Yes, wow. So, imagine, they tell you, "Listen, well, you have stage four breast cancer, it's very advanced, etc., etc., your life is already in danger and it turns out the company fires you because you have cancer, right?

[00:20:55]Yes, I completely believe you.

[00:20:57]Yes. So, from that situation, she embarks on a very tough fight to have her rights respected, right? I mean, because also, look, why haven't you brought her here to talk with us to make her more visible? I'm going to tell you, look, Rocío was supposed to be with Juan today, this Ruis Hilly, what's his name?

[00:21:22]Ah, Eduardo.

[00:21:23]Eduardo Ruis Hilly. Uh-huh. He told me that I was going to be with him. Uh, Rocío already has metastasis in several parts of her body, right? So, what can I say? It's a sad thing, one that no one has wanted to help with, that the Supreme Court ruled in her favor. But you know that power and money don't.

[00:21:50]So, not even with a ruling in her favor for the company to recognize and pay her for the moral damage because it discriminated against her, stigmatized her, that is, the company was very, very cruel.

[00:22:08]Well, she revictimized her because she is already a victim of cancer. Sure, sure, he revictimized her, but it doesn't go beyond that, and then it turns out that she is now the guilty one, and so the company wants her to apologize, to offer a public apology, and to pay him, to deposit a peso. Imagine, I mean, what cases, right? I mean, a woman who, let's say, I tell her, Rocío, well, sometimes I don't know what to say to her anymore, but a woman who tells me, "I'm at the end of my life now. It's been almost two years of fighting this. Yes. And she tells me, "I 'm at the end of my life now." Yes, I'm telling you, it has metastasis, what's it called?

[00:22:59]Metastasis goals.

[00:23:00]Goals. Uh-huh. In several lungs.

[00:23:04]different parts and says, "I don't, I mean, I don't want to leave without setting a precedent, right?" So, a very, very hard one. And just like that one, I included another one that features one of my girls, which I also talked about in the story, because I include everything, right? That's when I bring in Brook, I mean, I don't know how old he is, uh, I don't know how old he is. I found her in Itapalapa, her name is Brook, she is blind and has heart disease. And then I begin to narrate Brook's story, how I found her and how she came to be in this situation, already blind, and suffering from heart disease, a little animal that, despite her circumstances, adapts more easily than learned people, who have no prejudices. And then it hit me really well, Arturo, really well. So, you see, we human beings have this peculiarity of being extremely cruel to our fellow human beings.

[00:24:20]Yes. And so, you know, that's why I wanted to do this. Which story? Because what I'm trying to do is raise awareness. I mean, when I think I already told you, but when they had talked to me about the possibility of a protocol from the United States, Aeromexico made it impossible for me. The day before had been International Porphyry Day a year ago, and the guy there told me, "If it were up to me, you wouldn't be traveling."

[00:24:48]Because?

[00:24:49]Well, because he didn't like that Javier, my son, approached him to ask for help to board earlier because I had already done all the pre-boarding procedures while it was still dark and the sun was starting to rise and the sun was shining directly on me.

[00:25:03]Then Javier went to tell them that he couldn't and they started making a serious plan in Mexico.

[00:25:10]Yes, you tell me, right? Wow, look how sad.

[00:25:15]So, yes, I mean, I think it's very important to create this kind of content so that when people read it, they feel something, right? And I mean, I'm thankfully doing well. Perhaps the person next to me, my neighbor, is suffering right now, and I, well, I can help him maybe just by being there for him, by listening to him, but maybe I can provide financial support so he doesn't have pain, etc., but it has to be said, I mean, we have to look for ways, look for platforms because, well, you see, in illness you find that you live in tremendous loneliness because you end up tiring people out. Hey, how are you feeling? Well, they don't ask you anymore. And I understand them. I understand them, but this one, well, no way.

[00:26:19]Yes, yes, yes, yes. I know exactly what you're saying. Yes, I know. And sometimes, when that moment arrives when you think or feel that you've tired people out, or that the family is no longer on your mind, in your spirits, etc., etc., because there comes a moment when that person, the sick person, the one who is suffering, gets into a bubble, right? And he says, "You know what?

[00:26:48]I'm going to live here, I'm going to create my own world, I'm going to suffer alone because they get annoyed and don't share. I mean, that's how it is. My dad suffered from back problems and when people saw him they would say, 'Oh, you look great.'" It's my back that hurts, not my face. M.

[00:27:07]And yes, unfortunately I tell you, what you don't see you don't understand. And I say, I understand, I understand because, for example, porphyria specifically, if you're not looking for it, it comes about through a diagnosis of exclusion, since they removed your gallbladder, since they removed your spleen, since they removed your appendix, they think that maybe it could be porphyria, and then they look for it and it turns out that everything else was fine, but you had porphyria. Son, no, no, no, no desc. Hey, that's really harsh what you 're saying, isn't it? Hey, Arturo, you know, my mother, may she rest in peace, had Parkinson's disease.

[00:27:47]Yes.

[00:27:49]Uh, he got it very young, at 40, and he lived. My mom died at 71, so he lived 31 years with Parkinson's.

[00:28:01]It's a terrible disease too, Arturo.

[00:28:03]Terrible. And you gradually run out.

[00:28:06]No, no, no. The body feels tremendously inferior, this, a lot of pain. I mean, I know what you're talking about because I had it, my mother suffered from that, so I know perfectly well what it's like to have a sick person like that and sometimes, like you said, "Oh mom, come on," I mean, "You're not putting in the effort," and I do n't know what else. It's very difficult, very difficult, very hard. And so what's left for us, and I think you and I have talked about this, is to accept our circumstances, and well, I always say and I'll say it again, it's about putting yourself in God's hands because He's the only one who doesn't criticize you, doesn't lose patience with you, and I say, this is a matter of faith because we don't see it, but we rely on Him, I mean, at least I do, you know? I mean, within everything that has happened to me and it wasn't No, and you know, you know that I also limp on the same foot as you in that sense.

[00:29:19]Yes. Well, look, I mean, that's why we do n't know why these things happen, why you got that disease, what you have to learn. We don't know, Arturo. What is certain is that God strengthens us in the face of these things, and that we definitely have to learn from what happens to us.

[00:29:40]And that you too, who are suffering so much, you are, uh, I already told you, and we're talking about it here with our friends because maybe one of them might also be suffering from something like this, maybe a nurse or... no, no, but maybe it could seem like depression, which is a terrible disease, depression too, and it's also this, I mean, when you don't have depression, people don't understand you, right? No. And they judge you. They are very quick to judge, but unfortunately, not to understand.

[00:30:18]Clear. And depression is going to become the second leading cause of death worldwide.

[00:30:25]So this is an illness that leads you to live in solitude, precisely because people get tired of hearing, "Oh, you 're sad again, you're always crying," and that's not right. So yes, it is very strong, very strong, but in the face of all these things I tell you, hold on to God, He strengthens you in what you are experiencing and may His will be done. That's how it is.

[00:30:56]This and learning from animals too, because as I said, in their case, since they have such a high pain threshold, they endure things that we wouldn't be able to.

[00:31:09]Then I see them and I say, "Wow, I mean, animals are an example of strength, considering everything we do to them and how they're still there." So, well, we'll see.

[00:31:21]Oh, look, I was going to put a picture of Fide Mirón, who is a person I admire very much.

[00:31:31]Uh, she has terrible porphyria and she decided to be the international face of porphyria.

[00:31:41]I'm just figuring out how I can continue this here.

[00:31:47]Allow me.

[00:31:48]How many types of porphyria are there? There are two groups of this type of porphyria: hepatic porphyria and cutaneous porphyria.

[00:32:00]In the hepatic there are six and in the cutaneous there are two.

[00:32:08]One of them is the one I have. In other words, it has so many levels.

[00:32:13]Yes, it's a decent amount.

[00:32:16]Porphyra is related to blood production. So, there are eight rings in the production of blood and the last ring is when you become emo. So, in my case, it's the penultimate stage before becoming emo. So, that's why my body is so susceptible to receiving radiation and getting hurt; in a matter of minutes I start to feel bad. In the matter of FIDE, for example, it takes longer, but she wants to see how I can share this photo because I can't. Let me see, there's a fly here. I'm being buzzed around, now a fly is really buzzing around me.

[00:33:05]The fly is buzzing around. He's acting suspiciously. Oh, damned things. Oh, it's the heat and no, no, no. Okay, so, let's see, hepatic porphyria affects the liver, right?

[00:33:18]Yes.

[00:33:19]And cutania, well, it's the skin, we know. But then, but both are super painful.

[00:33:26]They are different, but yes, they are painful.

[00:33:30]And what is it that eats away at your flesh? In other words, it seems to be Gunter's stubbornness, which is another other kind of stubbornness. Another thing is that I'm trying to upload it, but I don't understand why it won't put it here so I can upload it.

[00:33:48]What happened, my dear producer? If you 're very... Well, you see what happens when someone starts saying that it's fast and all that, and it turns out that it's not true, and you 're bragging that I'm scolding the producer, and I don't even know who it is.

[00:34:03]But you know, Fid's story is really, really impactful because when I talked to her in Spain, she told me, "I don't know what it's like to be invited to the movies because I scare people.

[00:34:20]So I don't know what it's like to have a friend, I don't know what it's like to be invited to a birthday party." It really makes you feel like a nuisance because you think, "I complain, but how is it possible that it's already over, I mean, when there are situations, but it's just one's own fault and one complains, right?" So, when you see someone else is worse off, that's when you say, "Look, this one I'm going to show you right now, that's how her hands are already, because I'm telling you, they are turning black.

[00:34:59]Yes, yes, her tissues are turning black, and it 's like leprosy, like it's leprosy.

[00:35:12]No, exactly, because, wait, she's F from Mirón.

[00:35:23]Oh, look. Mm.

[00:35:25]But I'm going to find you another one right now.

[00:35:34]M.

[00:35:37]Oh my God. I don't understand why I won't let myself.

[00:35:41]Hey, and she's definitely already... I mean, you say she's the face of porphyria, I mean, of this type.

[00:35:48]She's the international face of porphyria. Yes.

[00:35:51]She was so generous, how brave. How brave. She really was. How brave, because not just anyone, like you said, with a situation like that, with such an awful disease, and what worries her is that people will bother her mother because she knows that if they bother her, well, it 's very hard for her mother." Uh-huh.

[00:36:14]That's how her little hands look now, from what the sun has mutilated. Good heavens. Those are her hands. Those are her hands, and the hands holding her are those of the doctor who's developing the medication for that type of porphyria.

[00:36:28]I mean, unfortunately, she won't get it now because it's already too advanced for her, but what about her face, right? Her face.

[00:36:38]Yes, her face too. Oh, my God.

[00:36:41]And then, for example, the porphyria she suffers from, well, you could say it's fatal, well, they 're all fatal. I mean, if you go into a porphyria crisis and you don't get treatment, you can die in a matter of hours. You do n't say.

[00:37:06]So you really have to take very, very good care of yourself, right? And especially avoid triggers, right? I mean, well, take those precautions, like you do, right? When you go out with The glasses, the hat, the gloves—I mean, being as little exposed as possible to light, rays, and so on, right?

[00:37:29]I think it's a way to prevent it, but when it hits you really hard, well, it knocks you down, it practically knocks you down, man. Well, yes, no, it really does knock you down because that's when your body tells you, "I can't," even if you say whatever you want, and unfortunately, we're not used to listening to our bodies.

[00:37:55]Yes, yes. Only when the pain is really high do you say, " Wow, my body is telling me I 'm in trouble." No, look, this is her face. She's already lost her lips, she's already lost her teeth. It did n't happen to me. Oh no, no, no, how awful.

[00:38:14]So, like I said, people are scared, and she was telling me, " How old is she?"

[00:38:24]She must be about 45 years old, more or less.

[00:38:27]Young, I mean, she never knew what a boyfriend was, nothing like that.

[00:38:31]No, no Tell me. Lurd is Isabel's daughter. She had intermittent porphyria.

[00:38:37]Who?

[00:38:37]She's a type of the writer Isabel Yende's daughter.

[00:38:41]Oh, I see. Oh, okay. Oh, also.

[00:38:44]Yes.

[00:38:47]Oh, but this porphyria, how are you?

[00:38:50]Uh, also, for example, Dr. House, uh, I found out later that he had porphyria, so now it's clear to me why he brought up porphyria so much in his shows. Uh, he hasn't said what type of porphyria, but I do know that he has it. Cindy Looper, for example, also has porphyria. I don't know the type of porphyria either, but I also know that she has it. And they aren't doing anything for some campaign or anything. That's why. Well, we're very limited because imagine if we're talking about one in 10,000 people, well, what pharmaceutical company is really going to get involved because it's not profitable.

[00:39:35]Of course, of course. No, well, it's like cancer. But like cancer, there's a higher prevalence. So yes, there are more people getting involved with the issue of cancer.

[00:39:47]Mm.

[00:39:48]But I'm referring to the expensive part, you know, my friend.

[00:39:51]Yes, right? Because cancer is also terrible, terrible, terrible. It's a real epidemic, this thing about cancer.

[00:40:03]No, no, no. Well, look, you know, maybe it would be good if you interviewed him because it's a topic, I mean, it's something that leaves me in awe. You know, Humberto Padet, I don't know if you know him. Yes, of course.

[00:40:18]Well, Humberto has been a reporter his whole life, he covered the police almost his entire life, and he was always, well, reporting on criminals, and so on, and so on, but guess what? He got tongue cancer, my friend?

[00:40:36]So they cut out a piece of his tongue. Uh, he can still speak, but well, not as normally anymore. Right.

[00:40:45]And the most admirable thing, Arturo, is that right now he's in palliative care.

[00:40:52]You know, How terrible. But he's reporting on his own case, I mean, he's telling it through Ciro Gómez Leiva's program, because he even worked with him, he's reporting, he's reporting, I mean, what is a patient with tongue cancer? So I told him, "Arturo, I mean, this Humberto, I mean, how strong and how admirable you are, because even though he has practically fought to save his life, to beat death, well, at the end, he's even sitting where they're giving him chemotherapy and I don't know how many doses, and he's explaining what they're doing to the patient, I mean, he's reporting, Arturo." Yes, he's reporting. Look, for example, I know that for me, it's very likely that there won't be any kind of medication left, but if I can take a step forward so that the generations that come after me don't have to take 50 years to be diagnosed, or to make them visible and say, yes, we exist, here we are, and so that I feel that my life wasn't a waste, wow. Because being locked in a room.

[00:42:18]Exactly.

[00:42:21]It's like what Rocío says, that is, to set a precedent, right?

[00:42:25]Yes, absolutely. I mean, if you have to leave, go away, well, then I don't want other people, other women, to experience what I experienced, right?

[00:42:36]So, Humberto, the same, I mean, let's see, right? And Humberto was very active during the epidemic and went into places that were, yes, quite complex.

[00:42:48]Well, I mean, I wish it would be good if you interviewed him, look, I can give you his number later if you want.

[00:42:54]Yes, with pleasure. If he wants to, fine.

[00:42:57]I mean, I don't even know, right? But I see him as very open, I mean, I'm really telling you, he's reporting it himself, I mean, he uploads videos with Ciro about how things are going, what they 're doing, what the doctors are telling him, because, like I said, he's already in palliative care and you know that when you're at that stage it's almost goodbye.

[00:43:18]Arturo, then, but even all our friends who wanted to hear the gossip you have about you know who and you know who, well, we're not telling them anything anymore, damn it. No, well, no, but, I mean, no, of course, but this is also super important because we're talking about a disease that, wow, look, when this Dr. Kersenovic came to the Ministry of Foreign Affairs, sorry, the Ministry of Health, I met him as a private doctor, he saw me as a hepatologist. I sent him a letter, but he didn't answer it.

[00:44:06]I sent a hepatologist.

[00:44:07]Hematologist.

[00:44:08]Liver specialist.

[00:44:10]Ah, liver. Hepatologist. Ah, okay.

[00:44:13]And she never answered me. Idea.

[00:44:15]Speaking of speaking, wait for me, speaking of Chinme, do you know what this doctor's name is?

[00:44:23]Dr. Kenovich. This is the one who is Claudia Shembu's health secretary.

[00:44:28]Yes.

[00:44:29]Well, do you know how Claudia Shembu met him?

[00:44:33]No, I have no idea.

[00:44:34]Well, she was his patient, she was his nutrition patient for many years. What about what? That's what I don't know yet, but she's got something. That's why she pulled him in, because she already knew him as a patient.

[00:44:52]Clear.

[00:44:53]But then he investigated the gossip thoroughly. I already know, no, because people will think we're gossips. If not, I'll tell you about it, right? Hey, so, let's see, you were saying, sorry to interrupt.

[00:45:05]No, no, it's not right. The thing is, I 'm looking for a statement that I can't find, as usual. To tips that this man never answered you.

[00:45:13]No, no, because I was proposing to use Porphyria as a spearhead to create protocols in Mexico, but about rare diseases. Um, specifically in the Congress of the Union, for example, there are two initiatives, I'll explain very quickly, in this case from Morena, that are seeking, first, to reform the General Health Law and that is good, because it seeks to establish a protocol for the care of patients with spinal muscular atrophy, rare diseases that urgently need to be detected in time within the government's public policy so that they can also be treated.

[00:45:55]Um, there is another initiative from the Chamber of Deputies, by Mónica Herrera, where it talks about the creation of a national registry of rare diseases in this context. And so quickly, the question is whether your government will support these two initiatives, which are already a worrying issue due to these types of rare diseases. Madam President, rare diseases are a problem with many facets. One of the very important things is precisely trying to have a registry to know those people who have the problem and we are considering their approach as entry into research protocols because these are conditions that can sometimes cost up to half a million pesos a week. Some of them have short periods of relief and survival.

[00:46:57]There is a lot of research about rare diseases happening worldwide, and so what we are doing with the simplification of COFEPRIS is to have the possibility of including those patients in the new advances in medicine.

[00:47:16]Ask me how many protocols are currently active in Mexico. That's what I was going to tell you. And then, and then, I mean, instead of saying tomorrow I'll sit down to start having sex, but rare diseases, right? Of course not. So, how do they make a lot of money?

[00:47:32]Let them suffer, let them die, right? Well, it's like 500,000 pesos a week, I mean, what do you think, Arturo? How cruel, huh? I mean, the truth is I hadn't seen that morning press conference, and Jaime Guerrero was kind enough to let me know that he had seen what they had said about the rare diseases, and when I looked it up, wow, a bucket of old-fashioned nonsense.

[00:48:01]The first time the topic came up at the morning press conference, they told you, "No, we're not interested in money for Shembu," he said nothing. That's not it. No, no, no. You know she never knows anything. He always passes the ball to those who are together.

[00:48:18]And even if she had said, you know she's a big liar, because she would have said, "Oh yes, we're going to do it, and no, well, if this man said that he is going to do a registration to find out where you already have the registration, he has made you think no." I'm telling you, I sent him another letter saying, " This doctor, we offer you the Mexican Society for Porphyria so that Porphyria can be the spearhead to start this registry of rare diseases." He didn't answer my letter. I sent Zoé Robledo one that I thought she had also told me to get lost, but it turned out that they looked for me from Social Security, they made me go to the office there on Reforma, the elevators weren't working, I had to go up seven floors on a skateboard with my cane and everything. And I mean, the doctors there were very kind to us, but they told me, "No, well, you have to go to the secretary's office, sorry, to the secretary, so that he can give a budget, and you have to see your representative and your senator because, well, what more could we want?"

[00:49:26]But there's no money.

[00:49:28]Son.

[00:49:28]So, well, that's what they steal, right? I mean, I think it's from the money they stole, Lenita. This is something. Who has stolen money from Morena? It's not a fortune. In other words, billions of pesos have been stolen and continue to be stolen. So, with that, with that, big heist that all these people pulled off, they should take it away from them. And I say, of course there would be money for cases like this, for diseases like this, for... How many times bigger is the fuel theft fraud than Sedalmex to have a threefold proportion?

[00:50:10]No, yes, not much more, my friend.

[00:50:11]Much more, right?

[00:50:12]Yes. No, because you're talking about 600 billion pesos in fuel theft.

[00:50:16]It's crazy. It's crazy. And Segalmex was 15 billion. I mean, just imagine. It 's not crazy. I mean, with that money, of course there would be enough to help those suffering from porphyria, from this muscular atrophy, which is also extremely painful.

[00:50:38]And no, it's not that porphyria is better or worse than another type of disease. We all need support. And that's another thing that fills me with helplessness and anger because they make you compete to see who causes the most pity, and that's not what it's about.

[00:50:52]You are a human being. They have no right to humiliate you and make you go to Es de migrantes.

[00:50:57]This government is the most migrant-friendly thing about it.

[00:51:01]What you're telling me, well look, I'm going to write something about what you 're telling me, your story in this chapter of mine. What story for? Well, in fact, in the chat I shared with them what this Political Animal did me the favor of publishing, which you also wrote about?

[00:51:21]Yes, yes.

[00:51:22]No, I'm not a writer, I mean, they just asked me if I could do a 5000 character one, well, it was kind of about living with a rare disease.

[00:51:34]Yes, yes, I already read it, I read it. So, well, from there I'm going to put you in my story. You'll see, you'll see.

[00:51:44]And I feel this, don't I? So, I'm going to quote this doctor saying no, no, no. That is, 500,000 pesos. As? You know, imagine how I feel right now because of the photosensitivity issue.

[00:52:01]Well, you already know, the public doesn't, but I'll tell you anyway. Um, I have a lot of pain in my eyes because, uh, due to photosensitivity, the pupils are struggling to stay closed and the eye muscle that keeps them closed is overworking.

[00:52:18]So, just as any muscle releases lactic acid, I bring pain to their eyes. So, they are dilating my pupils twice a day. So, trying to make this kind of material with dilated pupils is a huge hassle. I know, it's a big sacrifice. That's awful.

[00:52:36]So, this symptom, this is just giving you that eye problem, right? No. Oh, and I think my eyes are the most affected part of my body.

[00:52:48]Oh my God.

[00:52:50]Oh, friend, that's tough, that's tough.

[00:52:53]But believe me, believe me, there are worse.

[00:52:56]And speaking of God, precisely when we went to the conference they asked me to speak on behalf of Mexicans and Latin Americans, of all the people who are dying for lack of treatment in Latin America and in Mexico.

[00:53:13]The meeting took place in Pamplona, ​​and my wife Romina and my brother Jorge accompanied me. And I asked Jorge if he would do me the favor of taking me to Lourdes because I had promised the Virgin that if I went, I would stop by to say hello there.

[00:53:32]And Jorge, my brother, was scolding me, asking why I didn't ask God for things, and I told him, "Oh, Jorge, you scolded me too. It's just that I don't know how to ask for myself. I mean, I know how to ask for others, and I understand that someone will ask for me, and then I'm even, but it seems very selfish to ask for myself. I mean, I'm sure that if God wanted me to be free of what I have, I wouldn't need to go to Lourdes to get rid of it.

[00:53:58]No, no, no, no. Look, you're wrong there.

[00:54:01]Excuse me, but yes, because, look, I'm going to give you a passage from Jesus, just one of the many miracles our Lord performed, where one of the sick people he encountered said to him, 'If you want, you can heal him.'

[00:54:25]That's right.

[00:54:26]And he healed him.

[00:54:29]And that's what mine is called. It's called erythropoietic protoporphyria, but all the diseases together are called porphyrias. Excuse me, Elenita."

[00:54:41]Ah, well, that's it, when you pray to God, you place your intentions in His hands, and among the petitions and intentions you offer when you pray the rosary to our Blessed Mother, you pray for your family, and so on, for the whole world, but within that, Lord, I ask that you strengthen me. If you will, give me the health I need.

[00:55:14]Look, the only thing I ask for myself is faith. That's what I ask for.

[00:55:19]Well, strengthen my faith, nourish my spirit, give me direction, but also, if it is your will to give me health, give it to me because, look, I belong to you, I mean, you belong to God. Yes, of course, He is there to listen to us, right? I mean, I do pray for everyone, and I always include the animals. You know that, but I also say to Him, "Lord, help me." I mean, I know that you love me, that you hear me, and And you're the only one who has patience with me. So, help me so that I can help others. That's how it is. And Jesus listens to you, I mean, it's not that he hears, it's that it reached... No, no, no, no, no, no, no, no, no, no, no, no.

[00:56:11]Friends, in fact, I was asked that too, why I've never complained to God. Well, I have nothing to complain to God about. You do n't complain to God.

[00:56:22]No, no, no, no. You shouldn't, look, you can get angry many times and, and he himself said, Jesus, well, if you're going to complain to me, you get angry with God and you cry and you yell at him, etc. It can be to God the Father, it can be to God the Son.

[00:56:40]Never to the Holy Spirit, remember that he never, never, never... with him, he's not the one to whom he least expects to turn away because of those sins. They don't forgive each other, right? The Holy Spirit gives us the breath of life and is the Spirit of God.

[00:56:55]So, we should never complain to the Holy Spirit because He is the one who gives us everything. But even so, when we are fighting with God and you complain and cry, peace comes to you, I mean, it comes to you.

[00:57:11]But, who am I to complain to God? I mean, Glen Lenita, believe me, there are people who are worse off than me.

[00:57:19]But, I mean, but we are His children.

[00:57:21]So, he doesn't understand, I mean, because sometimes it's this despair.

[00:57:27]Look, Jesus did it when he felt fear in Gethsemane, remember.

[00:57:33]No, I'm aware, Father, I mean, I was afraid, I mean, do you think I wouldn't love to wake up one day and not feel pain and be able to go outside? Of course I would love it and I'm not closed off to God performing a miracle for me one day, but I 'm not clinging to it either, I mean, constantly complaining. So, I mean, life doesn't work like that, right? I mean, what you and I have been talking about, what we're talking about publicly, is accepting what we've been given in the best way possible, but always remaining close to God, that His will be done, but also, I mean, He is kind, He is merciful, He is love, He is everything.

[00:58:16]So He can, I mean, if there aren't miracles, it's because there's a lack of faith. I mean, that's why, because when there were miracles, there was more faith.

[00:58:28]Now, with so many things going on, that's why it's been lost. But even so, God is there listening to us. So, friends, today we're talking about a very important topic, which is porphyria. Let me tell Marta that she says she suffers from chronic pain because she has hyperparathyroidism, and one of the symptoms is severe muscle pain. You're in my prayers, and God willing, He will give you the strength.

[00:59:00]Yes, she has hypothyroidism.

[00:59:01]Oh, well, I'm hypothyroid too.

[00:59:03]Marta, uh, so this is just us women who can control ourselves with a little pill, right? But anyway, let's see. Today I want to ask everyone, since it's Friday, the weekend, that if you pray today, if you say the rosary, include Arturo Fierro in your intentions, put him in God's hands, that He may help him, strengthen him, give him light on his path so that what he's doing is so that other people do n't have to go through what he's going through, so that there's prevention, so that there's medication available, I mean, he's in a fight.

[00:59:48]So, we have to offer him to God, we have to put him in His hands, and I believe He will hear us. I'm absolutely sure, I have a lot of faith, but today, let that be our task, that when we pray we offer Arturo's health and suffering to our Lord Jesus Christ.

[01:00:13]But let's make a deal: I offer my pain for the people in the chat. And for peace in Mexico, and that's it. Um, no Don't make any trades, please.

[01:00:25]Um, we're not, what trades?

[01:00:26]We're not selling anything, please, today we're going to pray for... Yes, look, one always prays, Lord, for world peace, for this and that, but today, as something special, we're going to put you in His hands so that He may strengthen you.

[01:00:43]I am in His hands, if it is His will. And if it is His will, may He give you health. If it is His will, everything is according to God's will always.

[01:00:55]Look, in fact, my brothers always make fun of me because porphyria, especially the kind I have, is periodic and I urinate blood. So they told me that they sold me a man's body, but they told me to pay for it in easy monthly installments.

[01:01:11]So, well, that's fine.

[01:01:13]Uh, but there are people who are worse off than me, and well, what can I tell you about what we've talked about?

[01:01:23]We're going to put all the sick in better hands. That seems right to me, for all those who have this disease Rare, rare, and not rare. Hands in God to strengthen them, and also those who are about to leave their bodies and who already have to embark on something new because look, Mari, Mari Ortiz, who is here with us and who always accompanies us, we have a crusade in the Sunday Mass that we broadcast to always pray for people who have some mental illness because they are so misunderstood.

[01:01:59]Uh, that's what I'm saying, those whose mental illnesses are very serious, I mean, people who suffer from depression, wow, no, no.

[01:02:10]And for those who want to, no, no, you don't gain anything by attending that Mass. It's a Mass that arose as a result of COVID, when priests couldn't go to the hospitals.

[01:02:24]We broadcast every Sunday at 7 pm through the platform of Álvaro Olivares, who is the priest, on Zoom, on YouTube, and on Facebook, the Mass so that those who cannot attend due to illness or old age, or well, everyone knows why. Those who can't attend, can... this... a very beautiful prayer community has been formed.

[01:02:54]Of course, all of that is now permitted. Well, Arturo, friends, the program is over. Honestly, I think we didn't let you down. It was a great program today talking about this disease, with Arturo explaining and telling us what the situation is, where those with porphyria stand, what the situation is with the authorities, what a lack of sensitivity. It was a great program. I hope that all of us here are sensitive people, and thank you, Arturo, for telling us, for explaining.

[01:03:39]Thank you all for your patience, because I know you have your own thoughts.

[01:03:46]And for anyone watching this program, whether they have porphyria or not, if they are in pain and can't find out what it is, look for me and I promise to take you to someone who can give you a diagnosis. I know what it's like to live with this. Fifty years without finding out what's going on, and you know there's something wrong inside you.

[01:04:10]That's right.

[01:04:11]That's right. Well, let's echo what Arturo says, let's share it, and well, they can find you through Arturo here on the website. The email is a bit confusing because it's [email protected].

[01:04:32]But it's in the program description. Mm. So, through those means, as Arturo says, well, they can find him, and he's always very open, very kind, very caring, and he shares. So, people who feel bad, well, look for Arturo, he'll guide them.

[01:04:53]He's someone who knows how to do it, and with great pleasure.

[01:04:57]And before Arturo, remember, there's a supreme being who moves everything. So, first God, and then God, and finally God, and then Arturo.

[01:05:10]Thank you all very much, I appreciate it, and especially now. Yes, they were my psychologists today. We truly embrace you with much love.

[01:05:20]I embrace you all. We stand in solidarity with you. We're a little far away, but in heart and in affection we are very close, and we understand, at least I do, and I know that many friends here understand your situation, your suffering.

[01:05:43]Look, Mari is telling us that we have to be careful with them, with mental illnesses. Look, Eser, if you would do me a favor, at the beginning of the program I put a video where I explain what porphyrias are, because I wo n't have time to explain it to you now, but I'd be happy to.

[01:06:01]If you watch the beginning of the program, there's a video where I explain it. Well, a thousand thanks to everyone who watched us from the beginning, to those who are joining now, and please, always believe people when they tell you they're unwell.

[01:06:17]It's rare for someone who feels unwell to exaggerate.

[01:06:24]Things. If your child comes and says, "I feel sick, please listen to them."

[01:06:29]That's right. That's right.

[01:06:30]Well, that's what I'll take away from this, my dear Elenita. Have a wonderful weekend, and may the Holy Spirit guide us, Elenita, because that's right, He's always there. That's right. Have a great weekend, everyone. Have a fantastic time. Happy Friday, Saturday, and Sunday. And well, as we said, we'll see you next Saturday. Hey, share it, spread the word. Saturday, because on Saturday, share it, it's a very busy program.

[01:06:57]Share it, and those who can help with porphyria, please help too.

[01:07:03]Arturo, there, but we'll see you on Friday, right?

[01:07:05]Saturday. He put his Vancomer code there for those who want to donate.

[01:07:11]Everything, everything, everything helps, friends.

[01:07:14]Everything helps.

[01:07:15]Everything helps. Remember that sometimes you spend, uh, 1,000 Well, instead of buying some beers, donate it because there are people suffering, and you have no idea how sorry I am to put the number out, but oh well.

[01:07:32]No. Oh, no. Well, look, we already talked about that at the beginning, so it's embarrassing. I'm just sending you a big hug.

[01:07:42]Wait for me, just wait, to close the program, let me tell you that this Clara Brugada copied the color of porphyria because the lady is painting all of Mexico City lilac to cover everything up, I mean, all her nonsense or all her crimes, she 's painting everything lilac.

[01:08:03]But I have porphyria, I don't have axolotls. She also wears earrings. I tell her, "Hey, this lady, well, I'm closing now, we'll talk later." This lady from Clara, who is overwhelmed, wears earrings up to her nipple. I don't know why. I mean, this one 's weird, isn't it?

[01:08:22]I honestly hadn't noticed, but oh well.

[01:08:24]Yes, check it out. Her earrings go from here to here, I don't know if she wants to cover up, but what a horrible thing.

[01:08:34]Anyway, this was it, take good care of yourselves, I really appreciate it more than you can imagine.

[01:08:40]Thank you. No, well it's good that you were able to talk, that helps too. Thank you. Good afternoon.

[01:08:47]Blessings. Thank you. Good afternoon.

[01:08:54]Elena brings the floor.

[01:08:58]Donc cul risa mordas.

[01:09:01]Together they tear down the curtain of the presidential theater. Don't be fooled by promises or fictional accounts.

[01:09:14]The truth cannot be silenced. it becomes a song.

[01:09:24]The power of testimony is the voice that does not go away.

[01:09:31]When the people are awake, there is no turning back.

[01:09:37]No more palace tales, nor occasional sermons.

[01:09:44]The truth is sung loudly.

[01:09:48]In this revolution, let the circus of power tremble, let its curtains fall, because the people have already learned to listen to other reasons.

[01:10:11]Closing through testimony is the power of truth.

[01:10:17]And even if they want to silence us, we will continue until the end.

[01:10:36]Oh.