Google Cloud Speech-to-Text API (Chirp) + Gemini 2.5 Flash Non-Thinking. Treat it as a searchable index of what was broadcast, not a quotation record.
00:00:06disability.
00:00:28How are you? How are you doing? Welcome,
00:00:31welcome to sanamente. I'm Aisa García.
00:00:35I'll start with a question for today's
00:00:39program: how do you live when
00:00:42on the outside you seem super fine, but
00:00:45inside, your body is fighting a constant
00:00:49battle that nobody sees? Today we're going to talk about what
00:00:52happens after you're diagnosed with
00:00:55dysautonomia. How to
00:00:58work, how to exercise, how to
00:01:01lead a social life, and above all, most
00:01:05importantly, how to
00:01:08do they learn to recover your quality of life. We are joined in the
00:01:12studio by licensed Ivón
00:01:14García Richod, a specialist in
00:01:17physical medicine and rehabilitation.
00:01:21The topic of dysautonomia is in vogue, here and
00:01:25there. Why do they call it
00:01:28a disability?
00:01:30What does it do? What is it? Dysautonomia is
00:01:34a disability of the autonomic nervous system, there is
00:01:37a dysregulation, which is the autonomic nervous system. It
00:01:40dysregulates.
00:01:43so the heat affects Yes, but the autonomic nervous system manages
00:01:47to ask you beyond all the involuntary functions of our body,
00:01:50such as breathing, heart rate,
00:01:53blood pressure, but it works with two systems, the parasympathetic system and the
00:01:58daily hygiene, with sympathetic system. The sympathetic system is the one that keeps you
00:02:02on alert, the one that gives you a quick reaction.
00:02:04symptoms, then you go with An easy example in a car is the accelerator, the
00:02:08parasympathetic is the one that brakes in the car, but relaxes
00:02:11you and helps you recover. When these two
00:02:14systems don't agree and there is an
00:02:17imbalance, a myriad of symptoms appear that become
00:02:20incapacitating, and that's why it's called an invisible
00:02:24disability because in the end you look perfect, you look very good, but
00:02:28nobody knows the struggle you carry inside regulating your
00:02:31symptoms. Uh, these
00:02:34symptoms, because nobody understands these girls what they are experiencing
00:02:38because the symptoms can range from
00:02:41palpitations, tachycardia, fainting,
00:02:45anxiety, brain fog, extreme
00:02:48chronic fatigue that prevents you from getting
00:02:52out of bed, so it becomes a disability, of course, and these symptoms
00:02:55are confused with other diseases and people think
00:02:59that if you're tired, you're not really tired, it's
00:03:03that there are many symptoms that appear with dysautonomia, but there are
00:03:06some that are more disabling than others,
00:03:09nervous system and we are going to which are, for example, fainting, suddenly being startled and
00:03:12suddenly fainting, it creates, and we have to understand these girls
00:03:16and these young people who experience it. Imagine you have an
00:03:19exam or you have an appointment at work and you're
00:03:22anxious that a sensation of
00:03:26fainting will come and you'll faint or you won't be able to get there or that you have extreme
00:03:30fatigue that you literally can't get out of bed, and what happens with
00:03:33this, why is it a disability? Because in the
00:03:36end it's like, I'm going to give an example, it's like a car that you disconnect, you
00:03:40remove the electrical part and it doesn't work anymore, that's what happens to
00:03:43people with dysautonomia,
00:03:48empathy, knowledge of what they can't get out of bed, their autonomic system doesn't work, they're
00:03:51exhausted, they slept 8 hours or 10 hours
00:03:55and they wake up unable to even get up, so that
00:03:58is a disability. It's invisible because yesterday you were
00:04:02perfect and today you can't move, or today you're
00:04:06terrible and tomorrow you can go to work. That's not
00:04:09understood, it's not easy to understand,
00:04:12but Ivón, why have you gotten so involved in this topic,
00:04:16I mean, you're in the healthcare sector, you're
00:04:19a specialist with 30 years in rehabilitation,
00:04:23but why does this topic affect you so
00:04:26deeply? Well, this topic touches my heart and I'll tell
00:04:30you why. Because being in the healthcare
00:04:34field, it turns out that my daughter,
00:04:36energy of eight, in 22 or 23 at that time, has dysautonomia.
00:04:39She is diagnosed with dysautonomia.
00:04:43So I'm always looking
00:04:46you don't remember for new technologies and I found a device that helps with dysautonomia,
00:04:49but I can tell you more about this later. But as the
00:04:53mother of a young dysautonomic person, 23 years old,
00:04:56who you see all day on the bed, on the couch, it's horrible
00:05:00that they are in the prime of their lives, and you want to help them, you say: I can't
00:05:03believe it, but the worst thing is, and what I ask us to be
00:05:07aware of, is that there is a disease, there is an imbalance
00:05:11that causes symptoms and that it is real, and I want to tell you that I
00:05:14believe them, because until I learned to manage the autonomic
00:05:17nervous system, to understand the symptoms, I realized
00:05:21that neither my daughter was lazy, nor was my daughter exaggerated,
00:05:25nor was my daughter crazy, that if she was
00:05:29on the couch, I used to say she was part of the couch, she didn't get up, she
00:05:32used to tell me, mom, I'm going to buy melatonin gummies, these
00:05:36are exaggerations. I, being in the healthcare field, what are the signs
00:05:40that if your daughter, because this also occurs in young girls
00:05:44and it occurs more in girls, right? Yes, nine to
00:05:46one, nine to one. It's strong. If your
00:05:50daughter tells you what it is, that's when you have to
00:05:53turn on these warning signals, these
00:05:57red lights. It's very complex, because I think my daughter
00:06:00did have traits, very sensitive skin, she had a reflux
00:06:03problem, because with dysautonomia there are also affections to the
00:06:07digestive system, I mean, there is no dys autonomous person who doesn't have
00:06:10either reflux or problems with...
00:06:15or nausea, but the autonomic nervous system has something to do with
00:06:18it, no? So there can be situations, but it's very complex for a
00:06:22young person to be diagnosed, because when your daughter
00:06:25has diarrhea one day, another day she has constipation, you go to the gastroenterologist, you go to the
00:06:28gastroenterologist, they give you the pill, of course, girls with
00:06:32dysautonomia take three to five years to be able
00:06:35to be diagnosed, maybe they go from one to 7, 8 or even 10
00:06:3912 doctors because you go that you can't see well the
00:06:42ophthalmologist, that the stomach, the gastro, that I have a horrible
00:06:46anxiety, the psychologist and the psychiatrist, that
00:06:49I go, I have problems with urination, you go with the urologist
00:06:53so you go with all the specialists,
00:06:55me, yes, well, you faint and you say
00:06:58well, I for example did justify it, I said, oh well, of course, how are you not going to
00:07:02faint if you were in the sun and you were standing, well, of course, it happens to anyone,
00:07:06if you suddenly get up, well, of course, it's normal, you suddenly got up, and if
00:07:10you have tachycardia suddenly, when you're already
00:07:13talking about whether there are cardiovascular
00:07:17the cardiologist, yes, and you go with the cardiologist, but they can also give you
00:07:20medication and it happened to me that a patient was even going to undergo an
00:07:24intervention, I told her no, no, no, wait, what your daughter
00:07:27has is dysautonomia, don't put
00:07:30this 23-year-old girl through that, they had already operated
00:07:34on her bladder because she has frequent urination. What do you suggest, what do
00:07:37you recommend to mothers whose daughters
00:07:41have these five symptoms? Well, first of all,
00:07:45please learn about the disease. When
00:07:47you know the disease and you know the symptoms it has, and you know that it is
00:07:51real, you will be able to
00:07:55manage both the family and the person with
00:07:58dysautonomia, the symptoms in a different way,
00:08:01and above all, there will be an understanding from the family and the
00:08:05social environment, right? Knowing the
00:08:08disease, you know that it is real, you can also know
00:08:12what kind of measures to take, no? But the first thing I recommend is please
00:08:16self-knowledge of the
00:08:19patient and the family, and that you believe
00:08:23them. Girls with dysautonomia
00:08:25live two battles, one
00:08:28dealing with the symptoms they have internally, seeing how
00:08:32they live day by day, and then dealing with the social and
00:08:36family environment, that they are aware and believe them that they have
00:08:39it. It's ugly, it's difficult, because if they don't believe them, another
00:08:43problem arises. Well, imagine that they believe you and
00:08:45the anxiety, well, anxiety is generated because it's also a symptom of
00:08:49dysautonomia, but there is also anxiety and fear, because there is also
00:08:53social rejection, and attention, you also have to learn to deal with
00:08:56grief. And why do I say grief? Well, because
00:09:00girls who live with dysautonomia
00:09:04have lost their quality of life, they have
00:09:06lost what they liked to do, their life they used to live
00:09:10before, everything changed. It changed. What they liked,
00:09:13for example, being a dancer, well now they can't dance because they go on stage and they
00:09:16faint, the girls who liked tennis, the people who
00:09:19girls who went to parties or went to university, it's that there comes a
00:09:23moment when dysautonomia does generate a
00:09:26disability, so you lose those
00:09:29activities, you lose your life, you become paralyzed in a certain way, right?
00:09:33Because as you say, you can't do what you like to do or what you were
00:09:37used to doing. To which specialist should we
00:09:40take our girls if they have
00:09:43these symptoms, these problems, and we believe it could be
00:09:46dysautonomia? I would take them to the cardiologist
00:09:50first, yes, it could be, well, ultimately it's your trusted
00:09:54cardiologist, a neurologist or an internal
00:09:57medicine doctor, that would be ideal. What are we not seeing when
00:10:00we look at a person who has dysautonomia? The life
00:10:04they lead, the ordeal they are experiencing, social
00:10:08rejection,
00:10:10the suppression of their dreams, what will become of my life
00:10:13later? That's what we're not seeing, that's why it's an invisible
00:10:16disability, of course, because we see them perfectly well and we don't know
00:10:20that they have this condition. We're going to a
00:10:24break. Ivón García, specialist in
00:10:28rehabilitation and physiotherapy, and
00:10:31we'll be back very soon with more from Sanamente.
00:11:43We are back on sanamente, I am Aisa
00:11:47García and today I am talking to licensed Ivón
00:11:49García Richo, who is an
00:11:53expert in all this topic.
00:11:55Rehabilitation and physical
00:11:59medicine, 30 years, you have been
00:12:03doing this for 30 years, which is not a short
00:12:05time, and well, we were talking about
00:12:08dysautonomia and you said at the beginning of the
00:12:12program that this disease works like this,
00:12:16that one day you can feel relatively well
00:12:19and the next day you can't even get
00:12:22up. What happens to our
00:12:25body for this to happen? Well, as I told
00:12:28you, it is an imbalance of the autonomic nervous system, but what happens with
00:12:32patients is that in the end these
00:12:35symptoms disable them,
00:12:38these symptoms undermine their quality of life and they live with
00:12:41fear, because they are afraid to go out and
00:12:44faint, they are afraid of not being able to carry out the
00:12:47activity, they are afraid of making a plan today and having to
00:12:51cancel it, so regardless of the
00:12:54symptom, it is the anguish, the
00:12:56anxiety, well, it is obvious that there is also
00:12:59fear because you are afraid to face the next day, you don't know how you are going to wake
00:13:03up and obviously you also get
00:13:06depressed because in the end your quality
00:13:09of life is impaired, right? Invisible
00:13:13disability, as you said at the beginning, there are apparently simple things like bathing with
00:13:17hot water, drying
00:13:21your hair with a hairdryer, cooking where there's a lot of steam,
00:13:25standing in line under the sun, all
00:13:27these things can become a tremendous
00:13:31challenge for people with
00:13:34dysautonomia, why? Well, those are actually
00:13:37somewhat forbidden, somewhat
00:13:40forbidden, because the recommendations
00:13:43are, if you know you have
00:13:45dysautonomia, you cannot stand in a
00:13:48line, if you know you have dysautonomia you cannot
00:13:52take long hot showers, very
00:13:55hot, so what do you recommend? Well,
00:13:58first it is recommended for a person with dysautonomia to increase
00:14:02sodium intake, drink a lot of water, 2 to
00:14:053 liters, but always with electrolytes,
00:14:08obviously no baths and not exposing yourself
00:14:12to showers, not standing
00:14:15for a long time in one
00:14:18place, yes, maintain a good
00:14:22diet, do not leave long fasting
00:14:25periods, exercise. Depending on the type
00:14:28of dysautonomia you have, and if it allows it, you have to strengthen your legs more, but
00:14:32above all, you have to be aware of which symptoms affect you the most so that
00:14:36you are attentive. Blood pressure measurements also help, these
00:14:40measures help to cope with these symptoms, and there are
00:14:43many patients, and it must be said, who manage it perfectly
00:14:47well, with good hydration, with the
00:14:50correct measures and by taking care of all these habits. In the end, they are habits
00:14:54that help improve your quality of life and cope with dysautonomia. You mentioned
00:14:57that one of the symptoms is precisely
00:15:00brain fog. How does this
00:15:03feel in practice? Well, imagine you read a
00:15:07page and suddenly
00:15:11what you read, you turn the page and you don't remember, or you want to say a
00:15:14phrase and you lose your words or you can't concentrate to
00:15:18ask a question, you live in your own world, you're
00:15:22depressed, so if it
00:15:25also disables you from making decisions, how do you
00:15:28live life like this, how do you work or
00:15:31study with symptoms
00:15:33that are unpredictable? Last night you were fine
00:15:37and today suddenly very bad. Well, that's the challenge and that's the difficulty, because in the end that's why it's an
00:15:41invisible
00:15:44The ideal thing would be to be able to
00:15:47carry a card that says invisible disability to create
00:15:51awareness, if you are at school, if you are working, that
00:15:55your close environment knows that you have
00:15:58dysautonomia, that it is a disability so that they can understand that there will be times when
00:16:02you cannot work, because if they turn off your
00:16:05car's switch,
00:16:08the car won't start, it won't move. If your system turns
00:16:11off, it's completely dysregulated, you can't
00:16:14get up, you can't think, you have a lot of anxiety, you can't
00:16:18work, you can't go to school.
00:16:20So in the end of the day, it is
00:16:24important that the environment knows what is happening so that we are
00:16:27empathetic and that as soon as that discomfort or that day or those two
00:16:31days pass, you return to normality. We received a question
00:16:34to the @sanamentetls account
00:16:37and they want to know how a patient, someone who has been
00:16:41diagnosed with dysautonomia, how
00:16:46recognize their limits without
00:16:48feeling like they are giving up their life, without feeling like
00:16:52they are giving up work,
00:16:55studies, or even a social life?
00:16:59I think first by knowing your symptoms well, your
00:17:02body, knowing what dysautonomia is, and as
00:17:06you go seeing... in the end it's a push and pull because maybe
00:17:10today I drank a liter of water but I didn't feel
00:17:13well enough and then I add more salt, in the end everyone will
00:17:17feel better because they feel it, it's more
00:17:20sodium, a greater number of electrolytes. Look, it's always
00:17:23good to carry those electrolyte tablets to put them in a
00:17:27bottle of water at any time and that will make them feel
00:17:31better, so with the measures that are recommended for
00:17:36self-awareness, which is very important,
00:17:40telling and teaching the people around you about what you have so
00:17:43that they understand what dysautonomia is and
00:17:47setting boundaries and not getting overwhelmed by social
00:17:50rejection, that will help them to keep working and that will help
00:17:53them to continue with their
00:17:56activities. Probably there will be a day when they can't get out of
00:18:00bed, probably there will be things that they will have to stop
00:18:03doing, but as they get to know
00:18:07their body better, knowing more about the symptoms they experience and
00:18:10how to manage them, this will help them lead a
00:18:14better quality of life day by day. Rehabilitation helps
00:18:18to have a better quality of life.
00:18:22I can happily tell you that we are applying a
00:18:25treatment called neuromodulation of the autonomic
00:18:29nervous system. It is a non-invasive
00:18:32neuromodulation through low-frequency microcurrents
00:18:35that what it does is
00:18:37that we work with the bioelectricity of the body, so to speak, we are
00:18:41going to work with the same type of electricity as the autonomic
00:18:46regulate it. It is very simple because in the end these
00:18:50microcurrents are practically imperceptible and electrodes are placed,
00:18:53five electrodes on the hands, in gloves and in
00:18:57ankle braces and a bidirectional
00:19:00electrode that is placed depending on the symptoms, so it is not
00:19:04a therapy, it is a program, it is a treatment. But we are
00:19:08happy and I can really say that thanks to this treatment there
00:19:12is light at the end of the tunnel, because many
00:19:15girls who had their quality of life diminished, who thought they would not go on
00:19:19stage again, who would not run a race again, who could not
00:19:22work, returned to their activities. Today I have a patient who has already done a half
00:19:26marathon, another who has returned to the stage. The truth is that in the end we have
00:19:29had very good responses, but yes,
00:19:32first a very good evaluation is done, a very good medical
00:19:36history and we go seeing... system by system to
00:19:39detect all the symptoms that our patient presents and
00:19:43depending on the type of symptoms they have, a specific
00:19:47protocol is designed so that
00:19:50we can recover this autonomic
00:19:53nervous system and regulate it. One of the first
00:19:56patients, it caught my attention that we put the equipment on her for the first therapy
00:20:00and the next day I asked her how she woke up, from 1 to
00:20:0310 what was her energy today? She told me I'm happy
00:20:07because before I woke up with an energy of four and
00:20:10after therapy I woke up with an
00:20:14the first sessions they start to see how the symptoms start to
00:20:17improve and the patients at first go regularly,
00:20:20then it spreads and then you don't see them anymore and
00:20:24the wonderful thing is that the mother and daughter tell you
00:20:27thank you because you changed my life. What would be
00:20:31the five habits that a person with
00:20:35dysautonomia absolutely must follow? Try to sleep
00:20:387 to 8 hours, sleep is very, very important because it is also
00:20:41affected, so yes or yes, sleep a minimum of
00:20:457-8 hours, always be well
00:20:47hydrated, yes, consume
00:20:51more salt than normal, always
00:20:55put electrolytes in water,
00:20:58these would be the main recommendations I had. Now, if they want and
00:21:02tolerate it, then compression stockings, not standing
00:21:05and avoiding things that can lead to increased
00:21:08symptoms. Here they ask us on the
00:21:11@telesuringlish account, which is the Telesur channel in
00:21:14English, what can a
00:21:18person with dysautonomia do from the moment they open their eyes in the
00:21:21morning to avoid getting up
00:21:25and immediately starting with dizziness, palpitations,
00:21:29weakness? I think the question is very
00:21:32important, what do you do if you wake up with those symptoms? Well,
00:21:36first of all, a patient with dysautonomia cannot suddenly
00:21:40get up, so they have to slowly
00:21:44open their eyes, they move a bit and they do it little
00:21:47by little, raising their arms, doing a little bit of movement
00:21:51so that the body regulates itself, but
00:21:54that cannot be predicted because in the end, perhaps you can't even
00:21:58get out of bed because you have chronic fatigue and it's not because you do
00:22:02something or follow some recommendation that your way
00:22:05of getting up will change. If it's a very bad
00:22:09day when you can't get out of bed, no matter how much I recommend
00:22:12you get up, you can't do it.
00:22:15If your system is not working, you don't have the
00:22:18energy, you can't get out of bed, the best thing is not to get up
00:22:22suddenly, always hydrate very well, the best thing
00:22:25first thing in the day is to consume water with electrolytes,
00:22:28be well hydrated to be able to cope with a better day, and
00:22:32since the topic touches your heart, I would like
00:22:37medicine, what phrase
00:22:40or with what tone should we stop talking
00:22:44to a person who has a disease that cannot be seen,
00:22:47that is difficult to see, that's why they call it invisible
00:22:50disability? I think with empathy, that would be the
00:22:54word, because when you are empathetic and understand and the patient who
00:22:57has dysautonomia knows that you
00:23:00crees, porque mucha gente no les cree y dicen se lo está
00:23:04inventando, pero cuando la gente y el paciente con disautonomía
00:23:08do believe them, and that you know that
00:23:11today you feel bad because you have symptoms or because
00:23:15anything happens, you give them peace, they feel
00:23:19accompanied. These patients need to be accompanied.
00:23:22What do you say about phrases like this: "But you look so
00:23:26good, surely what you have are nerves"? That's what the
00:23:30social environment says, the family environment, because perhaps
00:23:33within the family there is someone who does understand what
00:23:37the patient with dysautonomia has, but the other members of the
00:23:40family don't, so they always say "oh, it's just her things,"
00:23:43"it's stress," "she's always with her illnesses,"
00:23:47"she's a hypochondriac," "oh, she always..."
00:23:51We have to avoid those phrases, well, that can't be said. And if your mother
00:23:54tells you or a friend, "Hey, but you could do it yesterday, if you could do it
00:23:58yesterday, then you can do it today too." Those
00:24:01phrases that sound encouraging, those
00:24:05phrases kill the patient, I mean
00:24:08figuratively, not really, but they do
00:24:11depress them, they do bring them down, because imagine, put
00:24:15yourself in the shoes of someone that nobody believes what you have and you feel
00:24:18terrible. Yes, it's a tremendous frustration, I mean, that really and
00:24:22your best friend looks at you like, or she's
00:24:25saying, how exaggerated, yes, hey, yesterday
00:24:29you were fine, why aren't you fine today, or today you're perfect and tomorrow you
00:24:33cancel the plan, they don't believe you, so that's why I insist,
00:24:38dysautonomia is and its symptoms, and what do you
00:24:41say about this phrase that is heard a lot
00:24:45in these cases, people tell you: "Oh, just
00:24:48exercise and that's it." It will go away right away.
00:24:52No, because it's not about
00:24:55anxiety, anxiety is a symptom,
00:24:58it's something more and it's
00:25:02called dysautonomia, and that's why is invisible
00:25:05disability, thank you, thank you Givón
00:25:09for telling us this experience, for giving us these
00:25:12recommendations, that not only touch your heart,
00:25:16they come from your heart and from your own.
00:25:20experience as a health professional, but
00:25:23above all as a mother, thank you, no, happy to be here
00:25:26and I would just like to send a message if you allow me, it's
00:25:30please let's raise awareness
00:25:33all of us who have a patient with dysautonomia,
00:25:37because by raising awareness we will all be able to help, it's the
00:25:41only way to be able to help, by raising awareness, knowing the
00:25:45disease, thank you, thank you, thank you, thank you, thank you,
00:25:48well, you hear.
00:25:53Not everything that incapacitates
00:25:56is seen and not everything that seems to be fine
00:26:00is. There is the... mine that is
00:26:03an invisible disability. The next
00:26:06time someone tells you today I can't, perhaps,
00:26:10before judging them, we should ask ourselves
00:26:14how much effort it is costing
00:26:16this person to simply be
00:26:20there and even say: today I can't. I'm Aisa
00:26:23García, this is Sanamente and I hope that
00:26:26your day continues to be
00:26:28wonderful.