TELEARUBA — broadcast
20261102 033000 UTC
210 transcript segments
Google Cloud Speech-to-Text API (Chirp) + Gemini 2.5 Flash Non-Thinking
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[00:17:37] for the invitation, can Doctor Hartono tell us a bit
[00:17:41] about yourself? Yes, ehm, my name is
[00:17:44] Hartono, I originally came from Indonesia, but in
[00:17:48] 1930 I came to the Netherlands and I worked in the Netherlands
[00:17:51] for over 25 years, and then
[00:17:55] I ehm decided to stop last year, but a week after
[00:17:59] stopping I was asked if I could
[00:18:02] help here and from that moment, this is my fourth time that
[00:18:06] I am here. Last year twice for four weeks
[00:18:09] ehm last spring three months and now
[00:18:13] I am here until mid- January, until mid-January
[00:18:16] yes yes yes okay ehm let's talk
[00:18:20] about SUDEP, what is SUDEP
[00:18:22] now? Eh Jasmin, you said it yourself eh that SUDEP
[00:18:26] is an abbreviation, right? That is a a eh
[00:18:30] Sudden Unexpected
[00:18:32] Death by Epilepsy in epilepsy, in Dutch it
[00:18:36] is actually sudden. unexpected ehm eh
[00:18:39] death in people with epilepsy, but there is one
[00:18:43] important point, which is that you have excluded all other
[00:18:47] causes, and what are all other causes? Those are for example
[00:18:50] heart attack or eh, just to name a brain hemorrhage, those kinds
[00:18:54] of things, you have to exclude those first, yes, so it is really a
[00:18:57] direct answer, really, yes exactly, it is really in people with
[00:19:01] epilepsy, yes, and how often does this occur?
[00:19:04] Ehm eh that is in adults ehm
[00:19:08] one in 100 patient
[00:19:11] years, now pay close attention to those words patient years, what
[00:19:14] does that mean? That means that if you follow
[00:19:18] 100 patients with epilepsy for one year, then you have
[00:19:22] one SUDEP. In children, that is
[00:19:25] slightly less, because that is one in
[00:19:29] 4500 patient years, so if you express
[00:19:32] it in percentage eh eh then it is
[00:19:34] 0.02%. But yes, it may be
[00:19:38] small, but the consequences are of course disastrous,
[00:19:41] yes, and how does
[00:19:44] SUDEP occur? Ehm, what is it actually? Yes, that
[00:19:48] is eh unfortunately the precise cause
[00:19:51] is not clear what it is,
[00:19:54] but the mechanism itself is also
[00:19:57] ehm eh eh different eh
[00:20:00] let's just stick to eh this mechanism is
[00:20:04] multifactorial, there are at least four
[00:20:07] factors that play an important role and number
[00:20:11] one is respiratory depression, so that
[00:20:14] means that your breathing is so eh
[00:20:17] eh eh suppressed ehm eh inhibited
[00:20:21] so to speak and that has to do with eh
[00:20:24] eh suppression of your respiratory centers
[00:20:28] in your brain and the second is eh
[00:20:31] arrhythmias, cardiac arrhythmias
[00:20:35] ehm that also has to do with suppression of the
[00:20:39] eh eh brainstem, right? And
[00:20:42] thirdly, during that SUDEP, the entire
[00:20:46] system, the entire brain, as it were, gets a lockdown.
[00:20:50] And the fourth, yes, that is also
[00:20:53] a risk factor if you lie on your stomach
[00:20:57] yes, so there are four mechanisms, I say, right? It is
[00:21:00] not the cause, because we do not know the cause of SUDEP, those are the four
[00:21:04] mechanisms, but number one is the most important, it indeed has to do with breathing,
[00:21:08] yes, yes, and who runs more risk for
[00:21:11] yes, in principle
[00:21:13] eh eh eh almost all
[00:21:17] epilepsy patients with what we call
[00:21:21] eh generalized tonic clonic epileptic
[00:21:24] seizures, so that is people with
[00:21:26] eh eh eh eh how do you say
[00:21:30] that eh tonic then e really
[00:21:34] get the big ones, those are the most vulnerable, but of course there are
[00:21:37] a number of things that also contribute to that, among others
[00:21:41] one eh that tonic clonic, that is number one, the second, if
[00:21:45] that tonic clonic often occurs especially during the
[00:21:49] nocturnal and thirdly
[00:21:52] in people who do not take their medication properly,
[00:21:55] it is very important to ehm mention that, and the
[00:21:59] fourth, some people with generalized eh
[00:22:03] eh eh eh clonic tonic grand
[00:22:06] mal epilepsy seizures, which we call refractory, what is refractory? You
[00:22:10] have tried everything but those people keep having seizures,
[00:22:14] in short, the risk factors are
[00:22:17] ehm eh chronic tonic eh seizures, nocturnal
[00:22:21] seizures if you do not take your medication properly
[00:22:24] ehm eh eh if
[00:22:28] you have a refractory refractory eh so
[00:22:31] untreatable and why is ehm
[00:22:34] seizure control important? Well, as
[00:22:37] I said, ehm the more seizures you
[00:22:41] have, the greater the chance of
[00:22:44] eh eh eh eh increase in the frequency of
[00:22:48] seizures, that is also one of the factors that you really
[00:22:52] need to discuss with your neurologist, because then the
[00:22:55] neurologist might consider an extra medication or
[00:22:59] more medication or other medications
[00:23:02] eh for the patient themselves, what is most important is
[00:23:06] please faithfully take your medication, because if you
[00:23:09] take your medication, which increases your seizures, then you
[00:23:13] simply increase your risk of SUDEP, yes, so
[00:23:17] medication is important yes yes yes
[00:23:21] yes, so and how can they reduce the risk? Really
[00:23:25] steps from all, well, I just mentioned a number of factors
[00:23:28] right, what is eh important in eh eh
[00:23:32] the chance of SUDEP increasing
[00:23:35] but there are of course other risk factors
[00:23:38] that play a role, well, I mentioned nocturnal rest
[00:23:42] right, so eh lack of sleep lack of sleep but also
[00:23:46] stress oh yes certainly that is really a big risk but that is
[00:23:50] not only for SUDEP of course but for
[00:23:53] epilepsy in general yes right, as you know that but well
[00:23:57] it is a trigger is a trigger right, so that means and and those kinds of things
[00:24:01] play a role and but well all other general things are drugs
[00:24:04] alcohol etcetera, note I did not say that that is the cause
[00:24:08] but at the moment that you do that while your epilepsy is at
[00:24:11] its best, so that means the seizures are so
[00:24:15] very frequent and you do not take the medication
[00:24:19] then and
[00:24:22] you don't take it and then you also have nocturnal seizures and you still drink and you still drink
[00:24:26] then you're asking for trouble and it can only happen
[00:24:29] once, so normally you have to take it every day
[00:24:33] on the same day hm hm so it can also be that
[00:24:37] you don't do it one day and go drinking that can happen
[00:24:40] yes because that is sudden right, so that means unexpected
[00:24:44] the idea is sudden unexpected death so is there
[00:24:48] more in teenagers a bigger? No, no, it has not
[00:24:51] been shown that there is a higher risk
[00:24:54] in teenagers, but I can well imagine that
[00:24:58] yes, if you are a teenager you naturally want to try
[00:25:01] all kinds of things, all kinds of things
[00:25:05] in short, I don't think it's fair to only
[00:25:09] eh eh age, puberty, teenager, that
[00:25:12] that eh eh is called a risk factor, I
[00:25:16] would not dare to call that that, but
[00:25:19] eh... eh the attitude, the behavior and how you
[00:25:23] deal with yourself and your illness, it does play a role, do
[00:25:27] you think Doctor Hartono that it is important that everyone knows
[00:25:30] about SUDEP, absolutely, especially
[00:25:34] eh eh eh the risk and
[00:25:38] again the importance of what we call compliance, compliance that means
[00:25:42] the medicine, look, let's be honest, we are humans and
[00:25:45] humans do forget things, so if you for example
[00:25:49] forget once. Then the question comes: yes, but then I'm in
[00:25:53] danger with SUDEP, yes, that's how it is, only I think
[00:25:56] that you are not talking about once, yes
[00:26:00] what you are talking about is precisely people
[00:26:03] who do not take it several times
[00:26:07] or their own medication for example up and down, up and down the
[00:26:10] dosage because there are those patients who are also there so actually at
[00:26:14] the beginning of your diagnosis it is
[00:26:17] absolutely correct because then absolutely you still have because
[00:26:20] it takes years for my son to get everything, absolutely yes
[00:26:24] absolutely because look a
[00:26:26] patient who comes in at for example the emergency room or at
[00:26:30] the outpatient clinic with one
[00:26:34] generalized clonic tonic seizure, is he at
[00:26:37] risk of getting SUDEP? Yes, but yes, he
[00:26:40] is of course at less risk than
[00:26:43] someone who for example has 10 seizures a week, yes,
[00:26:47] I'm just giving an extreme example right, someone
[00:26:51] who has 10 seizures, if he then still takes his medication
[00:26:54] properly and another person has eight seizures, but he
[00:26:58] does not take his medication properly, then you know who will.
[00:27:11] if you do that then you will certainly get that yes that's not how it works I have read
[00:27:15] about eh nocturnal alarm systems hm hm
[00:27:18] do they work what do you think of yes and no
[00:27:21] eh yes in the sense that at the moment that you have such an alarm system
[00:27:25] then you hope
[00:27:28] you think that you can immediately help
[00:27:32] such a seizure in the night, yes you can come
[00:27:36] help, but pay close attention, that does not prevent
[00:27:39] the seizure, that does not treat the seizure,
[00:27:43] but if it is for example on your back or something then you can, yes, that's what
[00:27:47] helps, yes, that's how it is, yes okay, so that means as I said
[00:27:51] in the beginning too, eh, those are the four mechanisms, one of them is on the stomach
[00:27:54] right, and if you if you notice that you I don't know, stop breathing or
[00:27:58] something, then you can just and then
[00:28:01] directly. Yes, ehm and how can
[00:28:04] we talk about SUDEP without fear, because that is actually
[00:28:08] not the idea to bring fear into it, because I know that people
[00:28:11] don't know about it, yes yes, so I
[00:28:15] think eh, you have to of course present
[00:28:18] it calmly, yes and that calmly, that is of course
[00:28:22] also location, geographically,
[00:28:24] culturally, socially, socially also determined
[00:28:28] right, yes, look eh eh eh, I can very...
[00:28:33] directly talk about this in the Netherlands
[00:28:36] for example, but here you have to do something
[00:28:40] else, yes, so calmly, calmly,
[00:28:43] but the other thing is also clear
[00:28:46] honest, because there is no point in simply
[00:28:50] covering things up or sweeping them under the
[00:28:53] table, so two words, calm,
[00:28:57] honest, calm, but also honest, and as a neurologist
[00:29:00] do you tell your patients?
[00:29:03] Yes, directly ehm or maybe after or it
[00:29:07] is of course dependent on what kind of patient you have, right, as I said
[00:29:10] there are different types of epileptic seizures, but with
[00:29:14] eh generalized clonic tonic seizures then yes
[00:29:18] it is a discussion whether you then from the beginning
[00:29:21] suppose a patient comes with one seizure yes
[00:29:24] yes would you want to discuss that or would you want
[00:29:28] to say well we'll just wait and see yes I think
[00:29:32] it is very individually determined and said individually
[00:29:35] individually eh of the patient but also individually of the
[00:29:38] neurologist themselves yes okay that means there is
[00:29:42] no right or wrong choice in my
[00:29:45] opinion honestly if you force me now
[00:29:49] to answer what would I do
[00:29:52] for example a single seizure then I would like
[00:29:56] to say very probably I would not mention that yet yes
[00:29:59] thank you Doctor Hartono for the tech