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20261011 163000 UTC
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[00:00:06] disability.
[00:00:28] How are you? How are you doing? Welcome,
[00:00:31] welcome to sanamente. I'm Aisa García.
[00:00:35] I'll start with a question for today's
[00:00:39] program: how do you live when
[00:00:42] on the outside you seem super fine, but
[00:00:45] inside, your body is fighting a constant
[00:00:49] battle that nobody sees? Today we're going to talk about what
[00:00:52] happens after you're diagnosed with
[00:00:55] dysautonomia. How to
[00:00:58] work, how to exercise, how to
[00:01:01] lead a social life, and above all, most
[00:01:05] importantly, how to
[00:01:08] do they learn to recover your quality of life. We are joined in the
[00:01:12] studio by licensed Ivón
[00:01:14] García Richod, a specialist in
[00:01:17] physical medicine and rehabilitation.
[00:01:21] The topic of dysautonomia is in vogue, here and
[00:01:25] there. Why do they call it
[00:01:28] a disability?
[00:01:30] What does it do? What is it? Dysautonomia is
[00:01:34] a disability of the autonomic nervous system, there is
[00:01:37] a dysregulation, which is the autonomic nervous system. It
[00:01:40] dysregulates.
[00:01:43] so the heat affects Yes, but the autonomic nervous system manages
[00:01:47] to ask you beyond all the involuntary functions of our body,
[00:01:50] such as breathing, heart rate,
[00:01:53] blood pressure, but it works with two systems, the parasympathetic system and the
[00:01:58] daily hygiene, with sympathetic system. The sympathetic system is the one that keeps you
[00:02:02] on alert, the one that gives you a quick reaction.
[00:02:04] symptoms, then you go with An easy example in a car is the accelerator, the
[00:02:08] parasympathetic is the one that brakes in the car, but relaxes
[00:02:11] you and helps you recover. When these two
[00:02:14] systems don't agree and there is an
[00:02:17] imbalance, a myriad of symptoms appear that become
[00:02:20] incapacitating, and that's why it's called an invisible
[00:02:24] disability because in the end you look perfect, you look very good, but
[00:02:28] nobody knows the struggle you carry inside regulating your
[00:02:31] symptoms. Uh, these
[00:02:34] symptoms, because nobody understands these girls what they are experiencing
[00:02:38] because the symptoms can range from
[00:02:41] palpitations, tachycardia, fainting,
[00:02:45] anxiety, brain fog, extreme
[00:02:48] chronic fatigue that prevents you from getting
[00:02:52] out of bed, so it becomes a disability, of course, and these symptoms
[00:02:55] are confused with other diseases and people think
[00:02:59] that if you're tired, you're not really tired, it's
[00:03:03] that there are many symptoms that appear with dysautonomia, but there are
[00:03:06] some that are more disabling than others,
[00:03:09] nervous system and we are going to which are, for example, fainting, suddenly being startled and
[00:03:12] suddenly fainting, it creates, and we have to understand these girls
[00:03:16] and these young people who experience it. Imagine you have an
[00:03:19] exam or you have an appointment at work and you're
[00:03:22] anxious that a sensation of
[00:03:26] fainting will come and you'll faint or you won't be able to get there or that you have extreme
[00:03:30] fatigue that you literally can't get out of bed, and what happens with
[00:03:33] this, why is it a disability? Because in the
[00:03:36] end it's like, I'm going to give an example, it's like a car that you disconnect, you
[00:03:40] remove the electrical part and it doesn't work anymore, that's what happens to
[00:03:43] people with dysautonomia,
[00:03:48] empathy, knowledge of what they can't get out of bed, their autonomic system doesn't work, they're
[00:03:51] exhausted, they slept 8 hours or 10 hours
[00:03:55] and they wake up unable to even get up, so that
[00:03:58] is a disability. It's invisible because yesterday you were
[00:04:02] perfect and today you can't move, or today you're
[00:04:06] terrible and tomorrow you can go to work. That's not
[00:04:09] understood, it's not easy to understand,
[00:04:12] but Ivón, why have you gotten so involved in this topic,
[00:04:16] I mean, you're in the healthcare sector, you're
[00:04:19] a specialist with 30 years in rehabilitation,
[00:04:23] but why does this topic affect you so
[00:04:26] deeply? Well, this topic touches my heart and I'll tell
[00:04:30] you why. Because being in the healthcare
[00:04:34] field, it turns out that my daughter,
[00:04:36] energy of eight, in 22 or 23 at that time, has dysautonomia.
[00:04:39] She is diagnosed with dysautonomia.
[00:04:43] So I'm always looking
[00:04:46] you don't remember for new technologies and I found a device that helps with dysautonomia,
[00:04:49] but I can tell you more about this later. But as the
[00:04:53] mother of a young dysautonomic person, 23 years old,
[00:04:56] who you see all day on the bed, on the couch, it's horrible
[00:05:00] that they are in the prime of their lives, and you want to help them, you say: I can't
[00:05:03] believe it, but the worst thing is, and what I ask us to be
[00:05:07] aware of, is that there is a disease, there is an imbalance
[00:05:11] that causes symptoms and that it is real, and I want to tell you that I
[00:05:14] believe them, because until I learned to manage the autonomic
[00:05:17] nervous system, to understand the symptoms, I realized
[00:05:21] that neither my daughter was lazy, nor was my daughter exaggerated,
[00:05:25] nor was my daughter crazy, that if she was
[00:05:29] on the couch, I used to say she was part of the couch, she didn't get up, she
[00:05:32] used to tell me, mom, I'm going to buy melatonin gummies, these
[00:05:36] are exaggerations. I, being in the healthcare field, what are the signs
[00:05:40] that if your daughter, because this also occurs in young girls
[00:05:44] and it occurs more in girls, right? Yes, nine to
[00:05:46] one, nine to one. It's strong. If your
[00:05:50] daughter tells you what it is, that's when you have to
[00:05:53] turn on these warning signals, these
[00:05:57] red lights. It's very complex, because I think my daughter
[00:06:00] did have traits, very sensitive skin, she had a reflux
[00:06:03] problem, because with dysautonomia there are also affections to the
[00:06:07] digestive system, I mean, there is no dys autonomous person who doesn't have
[00:06:10] either reflux or problems with...
[00:06:15] or nausea, but the autonomic nervous system has something to do with
[00:06:18] it, no? So there can be situations, but it's very complex for a
[00:06:22] young person to be diagnosed, because when your daughter
[00:06:25] has diarrhea one day, another day she has constipation, you go to the gastroenterologist, you go to the
[00:06:28] gastroenterologist, they give you the pill, of course, girls with
[00:06:32] dysautonomia take three to five years to be able
[00:06:35] to be diagnosed, maybe they go from one to 7, 8 or even 10
[00:06:39] 12 doctors because you go that you can't see well the
[00:06:42] ophthalmologist, that the stomach, the gastro, that I have a horrible
[00:06:46] anxiety, the psychologist and the psychiatrist, that
[00:06:49] I go, I have problems with urination, you go with the urologist
[00:06:53] so you go with all the specialists,
[00:06:55] me, yes, well, you faint and you say
[00:06:58] well, I for example did justify it, I said, oh well, of course, how are you not going to
[00:07:02] faint if you were in the sun and you were standing, well, of course, it happens to anyone,
[00:07:06] if you suddenly get up, well, of course, it's normal, you suddenly got up, and if
[00:07:10] you have tachycardia suddenly, when you're already
[00:07:13] talking about whether there are cardiovascular
[00:07:17] the cardiologist, yes, and you go with the cardiologist, but they can also give you
[00:07:20] medication and it happened to me that a patient was even going to undergo an
[00:07:24] intervention, I told her no, no, no, wait, what your daughter
[00:07:27] has is dysautonomia, don't put
[00:07:30] this 23-year-old girl through that, they had already operated
[00:07:34] on her bladder because she has frequent urination. What do you suggest, what do
[00:07:37] you recommend to mothers whose daughters
[00:07:41] have these five symptoms? Well, first of all,
[00:07:45] please learn about the disease. When
[00:07:47] you know the disease and you know the symptoms it has, and you know that it is
[00:07:51] real, you will be able to
[00:07:55] manage both the family and the person with
[00:07:58] dysautonomia, the symptoms in a different way,
[00:08:01] and above all, there will be an understanding from the family and the
[00:08:05] social environment, right? Knowing the
[00:08:08] disease, you know that it is real, you can also know
[00:08:12] what kind of measures to take, no? But the first thing I recommend is please
[00:08:16] self-knowledge of the
[00:08:19] patient and the family, and that you believe
[00:08:23] them. Girls with dysautonomia
[00:08:25] live two battles, one
[00:08:28] dealing with the symptoms they have internally, seeing how
[00:08:32] they live day by day, and then dealing with the social and
[00:08:36] family environment, that they are aware and believe them that they have
[00:08:39] it. It's ugly, it's difficult, because if they don't believe them, another
[00:08:43] problem arises. Well, imagine that they believe you and
[00:08:45] the anxiety, well, anxiety is generated because it's also a symptom of
[00:08:49] dysautonomia, but there is also anxiety and fear, because there is also
[00:08:53] social rejection, and attention, you also have to learn to deal with
[00:08:56] grief. And why do I say grief? Well, because
[00:09:00] girls who live with dysautonomia
[00:09:04] have lost their quality of life, they have
[00:09:06] lost what they liked to do, their life they used to live
[00:09:10] before, everything changed. It changed. What they liked,
[00:09:13] for example, being a dancer, well now they can't dance because they go on stage and they
[00:09:16] faint, the girls who liked tennis, the people who
[00:09:19] girls who went to parties or went to university, it's that there comes a
[00:09:23] moment when dysautonomia does generate a
[00:09:26] disability, so you lose those
[00:09:29] activities, you lose your life, you become paralyzed in a certain way, right?
[00:09:33] Because as you say, you can't do what you like to do or what you were
[00:09:37] used to doing. To which specialist should we
[00:09:40] take our girls if they have
[00:09:43] these symptoms, these problems, and we believe it could be
[00:09:46] dysautonomia? I would take them to the cardiologist
[00:09:50] first, yes, it could be, well, ultimately it's your trusted
[00:09:54] cardiologist, a neurologist or an internal
[00:09:57] medicine doctor, that would be ideal. What are we not seeing when
[00:10:00] we look at a person who has dysautonomia? The life
[00:10:04] they lead, the ordeal they are experiencing, social
[00:10:08] rejection,
[00:10:10] the suppression of their dreams, what will become of my life
[00:10:13] later? That's what we're not seeing, that's why it's an invisible
[00:10:16] disability, of course, because we see them perfectly well and we don't know
[00:10:20] that they have this condition. We're going to a
[00:10:24] break. Ivón García, specialist in
[00:10:28] rehabilitation and physiotherapy, and
[00:10:31] we'll be back very soon with more from Sanamente.
[00:11:43] We are back on sanamente, I am Aisa
[00:11:47] García and today I am talking to licensed Ivón
[00:11:49] García Richo, who is an
[00:11:53] expert in all this topic.
[00:11:55] Rehabilitation and physical
[00:11:59] medicine, 30 years, you have been
[00:12:03] doing this for 30 years, which is not a short
[00:12:05] time, and well, we were talking about
[00:12:08] dysautonomia and you said at the beginning of the
[00:12:12] program that this disease works like this,
[00:12:16] that one day you can feel relatively well
[00:12:19] and the next day you can't even get
[00:12:22] up. What happens to our
[00:12:25] body for this to happen? Well, as I told
[00:12:28] you, it is an imbalance of the autonomic nervous system, but what happens with
[00:12:32] patients is that in the end these
[00:12:35] symptoms disable them,
[00:12:38] these symptoms undermine their quality of life and they live with
[00:12:41] fear, because they are afraid to go out and
[00:12:44] faint, they are afraid of not being able to carry out the
[00:12:47] activity, they are afraid of making a plan today and having to
[00:12:51] cancel it, so regardless of the
[00:12:54] symptom, it is the anguish, the
[00:12:56] anxiety, well, it is obvious that there is also
[00:12:59] fear because you are afraid to face the next day, you don't know how you are going to wake
[00:13:03] up and obviously you also get
[00:13:06] depressed because in the end your quality
[00:13:09] of life is impaired, right? Invisible
[00:13:13] disability, as you said at the beginning, there are apparently simple things like bathing with
[00:13:17] hot water, drying
[00:13:21] your hair with a hairdryer, cooking where there's a lot of steam,
[00:13:25] standing in line under the sun, all
[00:13:27] these things can become a tremendous
[00:13:31] challenge for people with
[00:13:34] dysautonomia, why? Well, those are actually
[00:13:37] somewhat forbidden, somewhat
[00:13:40] forbidden, because the recommendations
[00:13:43] are, if you know you have
[00:13:45] dysautonomia, you cannot stand in a
[00:13:48] line, if you know you have dysautonomia you cannot
[00:13:52] take long hot showers, very
[00:13:55] hot, so what do you recommend? Well,
[00:13:58] first it is recommended for a person with dysautonomia to increase
[00:14:02] sodium intake, drink a lot of water, 2 to
[00:14:05] 3 liters, but always with electrolytes,
[00:14:08] obviously no baths and not exposing yourself
[00:14:12] to showers, not standing
[00:14:15] for a long time in one
[00:14:18] place, yes, maintain a good
[00:14:22] diet, do not leave long fasting
[00:14:25] periods, exercise. Depending on the type
[00:14:28] of dysautonomia you have, and if it allows it, you have to strengthen your legs more, but
[00:14:32] above all, you have to be aware of which symptoms affect you the most so that
[00:14:36] you are attentive. Blood pressure measurements also help, these
[00:14:40] measures help to cope with these symptoms, and there are
[00:14:43] many patients, and it must be said, who manage it perfectly
[00:14:47] well, with good hydration, with the
[00:14:50] correct measures and by taking care of all these habits. In the end, they are habits
[00:14:54] that help improve your quality of life and cope with dysautonomia. You mentioned
[00:14:57] that one of the symptoms is precisely
[00:15:00] brain fog. How does this
[00:15:03] feel in practice? Well, imagine you read a
[00:15:07] page and suddenly
[00:15:11] what you read, you turn the page and you don't remember, or you want to say a
[00:15:14] phrase and you lose your words or you can't concentrate to
[00:15:18] ask a question, you live in your own world, you're
[00:15:22] depressed, so if it
[00:15:25] also disables you from making decisions, how do you
[00:15:28] live life like this, how do you work or
[00:15:31] study with symptoms
[00:15:33] that are unpredictable? Last night you were fine
[00:15:37] and today suddenly very bad. Well, that's the challenge and that's the difficulty, because in the end that's why it's an
[00:15:41] invisible
[00:15:44] The ideal thing would be to be able to
[00:15:47] carry a card that says invisible disability to create
[00:15:51] awareness, if you are at school, if you are working, that
[00:15:55] your close environment knows that you have
[00:15:58] dysautonomia, that it is a disability so that they can understand that there will be times when
[00:16:02] you cannot work, because if they turn off your
[00:16:05] car's switch,
[00:16:08] the car won't start, it won't move. If your system turns
[00:16:11] off, it's completely dysregulated, you can't
[00:16:14] get up, you can't think, you have a lot of anxiety, you can't
[00:16:18] work, you can't go to school.
[00:16:20] So in the end of the day, it is
[00:16:24] important that the environment knows what is happening so that we are
[00:16:27] empathetic and that as soon as that discomfort or that day or those two
[00:16:31] days pass, you return to normality. We received a question
[00:16:34] to the @sanamentetls account
[00:16:37] and they want to know how a patient, someone who has been
[00:16:41] diagnosed with dysautonomia, how
[00:16:46] recognize their limits without
[00:16:48] feeling like they are giving up their life, without feeling like
[00:16:52] they are giving up work,
[00:16:55] studies, or even a social life?
[00:16:59] I think first by knowing your symptoms well, your
[00:17:02] body, knowing what dysautonomia is, and as
[00:17:06] you go seeing... in the end it's a push and pull because maybe
[00:17:10] today I drank a liter of water but I didn't feel
[00:17:13] well enough and then I add more salt, in the end everyone will
[00:17:17] feel better because they feel it, it's more
[00:17:20] sodium, a greater number of electrolytes. Look, it's always
[00:17:23] good to carry those electrolyte tablets to put them in a
[00:17:27] bottle of water at any time and that will make them feel
[00:17:31] better, so with the measures that are recommended for
[00:17:36] self-awareness, which is very important,
[00:17:40] telling and teaching the people around you about what you have so
[00:17:43] that they understand what dysautonomia is and
[00:17:47] setting boundaries and not getting overwhelmed by social
[00:17:50] rejection, that will help them to keep working and that will help
[00:17:53] them to continue with their
[00:17:56] activities. Probably there will be a day when they can't get out of
[00:18:00] bed, probably there will be things that they will have to stop
[00:18:03] doing, but as they get to know
[00:18:07] their body better, knowing more about the symptoms they experience and
[00:18:10] how to manage them, this will help them lead a
[00:18:14] better quality of life day by day. Rehabilitation helps
[00:18:18] to have a better quality of life.
[00:18:22] I can happily tell you that we are applying a
[00:18:25] treatment called neuromodulation of the autonomic
[00:18:29] nervous system. It is a non-invasive
[00:18:32] neuromodulation through low-frequency microcurrents
[00:18:35] that what it does is
[00:18:37] that we work with the bioelectricity of the body, so to speak, we are
[00:18:41] going to work with the same type of electricity as the autonomic
[00:18:46] regulate it. It is very simple because in the end these
[00:18:50] microcurrents are practically imperceptible and electrodes are placed,
[00:18:53] five electrodes on the hands, in gloves and in
[00:18:57] ankle braces and a bidirectional
[00:19:00] electrode that is placed depending on the symptoms, so it is not
[00:19:04] a therapy, it is a program, it is a treatment. But we are
[00:19:08] happy and I can really say that thanks to this treatment there
[00:19:12] is light at the end of the tunnel, because many
[00:19:15] girls who had their quality of life diminished, who thought they would not go on
[00:19:19] stage again, who would not run a race again, who could not
[00:19:22] work, returned to their activities. Today I have a patient who has already done a half
[00:19:26] marathon, another who has returned to the stage. The truth is that in the end we have
[00:19:29] had very good responses, but yes,
[00:19:32] first a very good evaluation is done, a very good medical
[00:19:36] history and we go seeing... system by system to
[00:19:39] detect all the symptoms that our patient presents and
[00:19:43] depending on the type of symptoms they have, a specific
[00:19:47] protocol is designed so that
[00:19:50] we can recover this autonomic
[00:19:53] nervous system and regulate it. One of the first
[00:19:56] patients, it caught my attention that we put the equipment on her for the first therapy
[00:20:00] and the next day I asked her how she woke up, from 1 to
[00:20:03] 10 what was her energy today? She told me I'm happy
[00:20:07] because before I woke up with an energy of four and
[00:20:10] after therapy I woke up with an
[00:20:14] the first sessions they start to see how the symptoms start to
[00:20:17] improve and the patients at first go regularly,
[00:20:20] then it spreads and then you don't see them anymore and
[00:20:24] the wonderful thing is that the mother and daughter tell you
[00:20:27] thank you because you changed my life. What would be
[00:20:31] the five habits that a person with
[00:20:35] dysautonomia absolutely must follow? Try to sleep
[00:20:38] 7 to 8 hours, sleep is very, very important because it is also
[00:20:41] affected, so yes or yes, sleep a minimum of
[00:20:45] 7-8 hours, always be well
[00:20:47] hydrated, yes, consume
[00:20:51] more salt than normal, always
[00:20:55] put electrolytes in water,
[00:20:58] these would be the main recommendations I had. Now, if they want and
[00:21:02] tolerate it, then compression stockings, not standing
[00:21:05] and avoiding things that can lead to increased
[00:21:08] symptoms. Here they ask us on the
[00:21:11] @telesuringlish account, which is the Telesur channel in
[00:21:14] English, what can a
[00:21:18] person with dysautonomia do from the moment they open their eyes in the
[00:21:21] morning to avoid getting up
[00:21:25] and immediately starting with dizziness, palpitations,
[00:21:29] weakness? I think the question is very
[00:21:32] important, what do you do if you wake up with those symptoms? Well,
[00:21:36] first of all, a patient with dysautonomia cannot suddenly
[00:21:40] get up, so they have to slowly
[00:21:44] open their eyes, they move a bit and they do it little
[00:21:47] by little, raising their arms, doing a little bit of movement
[00:21:51] so that the body regulates itself, but
[00:21:54] that cannot be predicted because in the end, perhaps you can't even
[00:21:58] get out of bed because you have chronic fatigue and it's not because you do
[00:22:02] something or follow some recommendation that your way
[00:22:05] of getting up will change. If it's a very bad
[00:22:09] day when you can't get out of bed, no matter how much I recommend
[00:22:12] you get up, you can't do it.
[00:22:15] If your system is not working, you don't have the
[00:22:18] energy, you can't get out of bed, the best thing is not to get up
[00:22:22] suddenly, always hydrate very well, the best thing
[00:22:25] first thing in the day is to consume water with electrolytes,
[00:22:28] be well hydrated to be able to cope with a better day, and
[00:22:32] since the topic touches your heart, I would like
[00:22:37] medicine, what phrase
[00:22:40] or with what tone should we stop talking
[00:22:44] to a person who has a disease that cannot be seen,
[00:22:47] that is difficult to see, that's why they call it invisible
[00:22:50] disability? I think with empathy, that would be the
[00:22:54] word, because when you are empathetic and understand and the patient who
[00:22:57] has dysautonomia knows that you
[00:23:00] crees, porque mucha gente no les cree y dicen se lo está
[00:23:04] inventando, pero cuando la gente y el paciente con disautonomía
[00:23:08] do believe them, and that you know that
[00:23:11] today you feel bad because you have symptoms or because
[00:23:15] anything happens, you give them peace, they feel
[00:23:19] accompanied. These patients need to be accompanied.
[00:23:22] What do you say about phrases like this: "But you look so
[00:23:26] good, surely what you have are nerves"? That's what the
[00:23:30] social environment says, the family environment, because perhaps
[00:23:33] within the family there is someone who does understand what
[00:23:37] the patient with dysautonomia has, but the other members of the
[00:23:40] family 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..."
[00:23:51] We have to avoid those phrases, well, that can't be said. And if your mother
[00:23:54] tells you or a friend, "Hey, but you could do it yesterday, if you could do it
[00:23:58] yesterday, then you can do it today too." Those
[00:24:01] phrases that sound encouraging, those
[00:24:05] phrases kill the patient, I mean
[00:24:08] figuratively, not really, but they do
[00:24:11] depress them, they do bring them down, because imagine, put
[00:24:15] yourself in the shoes of someone that nobody believes what you have and you feel
[00:24:18] terrible. Yes, it's a tremendous frustration, I mean, that really and
[00:24:22] your best friend looks at you like, or she's
[00:24:25] saying, how exaggerated, yes, hey, yesterday
[00:24:29] you were fine, why aren't you fine today, or today you're perfect and tomorrow you
[00:24:33] cancel the plan, they don't believe you, so that's why I insist,
[00:24:38] dysautonomia is and its symptoms, and what do you
[00:24:41] say about this phrase that is heard a lot
[00:24:45] in these cases, people tell you: "Oh, just
[00:24:48] exercise and that's it." It will go away right away.
[00:24:52] No, because it's not about
[00:24:55] anxiety, anxiety is a symptom,
[00:24:58] it's something more and it's
[00:25:02] called dysautonomia, and that's why is invisible
[00:25:05] disability, thank you, thank you Givón
[00:25:09] for telling us this experience, for giving us these
[00:25:12] recommendations, that not only touch your heart,
[00:25:16] they come from your heart and from your own.
[00:25:20] experience as a health professional, but
[00:25:23] above all as a mother, thank you, no, happy to be here
[00:25:26] and I would just like to send a message if you allow me, it's
[00:25:30] please let's raise awareness
[00:25:33] all of us who have a patient with dysautonomia,
[00:25:37] because by raising awareness we will all be able to help, it's the
[00:25:41] only way to be able to help, by raising awareness, knowing the
[00:25:45] disease, thank you, thank you, thank you, thank you, thank you,
[00:25:48] well, you hear.
[00:25:53] Not everything that incapacitates
[00:25:56] is seen and not everything that seems to be fine
[00:26:00] is. There is the... mine that is
[00:26:03] an invisible disability. The next
[00:26:06] time someone tells you today I can't, perhaps,
[00:26:10] before judging them, we should ask ourselves
[00:26:14] how much effort it is costing
[00:26:16] this person to simply be
[00:26:20] there and even say: today I can't. I'm Aisa
[00:26:23] García, this is Sanamente and I hope that
[00:26:26] your day continues to be
[00:26:28] wonderful.