Epilepsy Is a Symptom! - Reetta Kälviäinen, University of Eastern Finland, Finland
“Epilepsy is not only a disease, epilepsy is a symptom of a brain disease. And brain health is everything, belongs to everybody!” Learn more of from and hear of the exciting, upcoming Kuopio Epilepsy Symposium in March 2024 - with exciting lead neurologist, researcher, and world-changer: Reeta Kälviäinen.
Reported by Torie Robinson | Edited and produced by Pete Allen
Podcast
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00:00 Reetta Kälviäinen
“I think epilepsy is a phenomenon that with what we can explain so many other things and it's, it’s really a window to your brain and window to your science.”00:10 Torie Robinson
Fellow homo sapiens! Welcome back to Epilepsy Sparks Insights. This week we have the star of Finland joining us - leading neurologist, epilepsy specialist, and researcher: Reetta Kälviänen. Reetta talks to us about her work on the gene variants in the Finnish population which has, and does, play a key part in epilepsy diagnoses, treatments, and further understanding of the human genome. Reetta also tells us about the exciting upcoming Kuopio Epilepsy Symposium - which sounds fabulous.
A quick one - please don’t forget to like, comment and subscribe. Your comment and like will help spread awareness and understanding of the epilepsies around the world.
Now, onto our star of the week, Reetta Kälviänen.00:50 Reetta Kälviäinen
I'm Reetta, Reetta Kälviänen. So I'm chair of Neurology in the University of Eastern Finland. So in Kuopio, Finland. And also director of the Epilepsy Center in Kuopio University Hospital. We are also one of the member centres of the EpiCARE European Reference Center.01:15 Torie Robinson
Tell us a bit about what your specialisation is when it comes to the epilepsies.01:20 Reetta Kälviäinen
Well, I have been working within epilepsy as a medical doctor and a neurologist and researcher like 40 years - since being in medical school - and I'm a clinical doctor. So, mostly, all kind of clinical epileptology, working a lot in hospital earlier, but now as professor and researcher and university person, I'm doing all sorts of epileptological research. But my main interest lately has been perhaps two important things. First, I'm looking to find biomarkers for epilepsy - in that respect that we could better tell the prognosis of specific epilepsy disease to a person. And I believe that there is not a single biomarker that could tell that prognosis and perhaps tell which drug would help a particular patient, but it could be a sort of combination of biomarkers. So there might be some blood-based biomarkers, there could be some genetic biomarkers, there could be EEG findings or imaging findings, and then we could combine these different kinds of findings with some kind of computerised Artificial Intelligence based tool. And then we could then interpret it together with the patient, so the doctor and the patient would then together interpret what kind of epilepsy the patient has, and then perhaps think about what is the future, what kind of medication we could use. So this is so-called “shared decision-making”. The other thing is that as we are a centre or member of the EpiCARE Reference Network for rare and complex epilepsies, I'm of course interested in rare epilepsies, and particularly one disease which is Progressive Myoclonic Epilepsy type 1 [(Unverricht–Lundborg Disease)}, which is very more common in Finland than anywhere else. And therefore, I've seen most of the patients in the whole world, I think.03:51 Torie Robinson
Wow, and just for people who aren't familiar with the country of Finland, why is it so common in Finland, this type of epilepsy?04:00 Reetta Kälviäinen
This is a very large country, area-wise, but the population at the moment is 5.6 million and was even less, earlier. And earlier days, there was a sort of… [the] population was very isolated. So therefore, some gene variants have become more popular than others. So we, for some diseases, we really have a so-called Finnish disease inherited. So some even rare diseases are more common here, and then some diseases we don't have at all! So for example, Progressive Myoclonic Epilepsy type 1 is very common, although also rare here in Finland, but then Progressive Myoclonic Epilepsy type 2, which is Lafora disease: that is non-existent - or nearly non-existent - in Finland. So therefore, we have a quite unique inheritance. And especially, this is true in the Eastern and Northern parts of Finland, where I work in the University of Eastern Finland. So this is a very interesting place to work. Also, of course, a little bit sad place to work because population is very somewhat more sick than in other parts of Finland; in the western and southern parts of Finland.05:34 Torie Robinson
But I've also read that as a result of this unfortunate situation, Finland has actually kind of embraced technology and genomics and actually is using this information to try and prevent and manage these genetic diseases, including rare epilepsies.05:56 Reetta Kälviäinen
Exactly. And we have, of course, done a lot of huge work for these diseases that belong to the Finnish disease inheritance. We have investigated a lot of them and that work also benefits other diseases. But also, some of the common variants are also more easily seen in some of the populations here in Finland and we can use also that to also detect and investigate the more common diseases. And we have folks, there's a very successful FinnGen project going in Finland where we have discovered the genome of over half a million inhabitants in Finland. And then we have connected the registry information of all kinds of the registries, like mortality register or drug information of these patients to the genome data. And that has brought a lot of new data and is going to continue, of course, here in Finland. That's a very successful project called FinnGen. There's also a lot of public information for everybody all over the world to be used.07:26 Torie Robinson
That's fabulous. And, actually, just that last bit you said about this data and information being used by the rest of the world. It's a perfect example, I think, of how research into the epilepsies doesn't solely benefit the individuals in the study or even the local population or the population of the country, but actually even benefits people around the world and even not just those with the diagnosis, but other diseases which are very similar. Reetta Kälviäinen (07:27.182)07:54 Reetta Kälviäinen
That's absolutely right. And epilepsy is not only a disease, epilepsy is a symptom of a brain disease. And brain health is everything, belongs to everybody. I think we should think so much more widely and our genome influences everything, including our brain health and diseases. So I'm so frustrated when...people think that it's only epilepsy and “I don't want to come to your education about epilepsy because I'm not interested in epilepsy.”. I think epilepsy is a phenomenon that with what we can explain so many other things and it's, it’s really a window to your brain and window to your science.08:40 Torie Robinson
I couldn't agree more. And also, even if people don't yet see that (which would be silly), but even if they don't see that side of things, epilepsy is one of the most interesting diseases ever. It is just so, it can be so complex, with so many factors coming in as to what the symptoms are - as you said, more than seizures! It is just…I shouldn't say mind blowing (!)... but it kind of is in that….in that exciting way, right, intellectually?!09:10 Reetta Kälviäinen
Yes, absolutely. It's of course demanding, intellectually, but also very interesting, and if you just open your mind and start to look for it, then you are really excited and you cannot stop anymore.09:28 Torie Robinson
Tell us a bit about this conference that you are holding in Finland, soon, that's coming up, and why people, it would be good for people to attend, including people who maybe have not shown interest to date of the epilepsies so far.09:41 Reetta Kälviäinen
So, we are going to have a Kuopio Epilepsy Symposium on 13th to 15th of March, so It's going to be physically in Kuopio, in our city theatre, very nice place, but, we are going to also have it remotely, so you can participate globally from anywhere, very important. It's very multidisciplinary. So, it's for doctors, clinical people, but also for researchers. So, it's very… for everybody: professionals interested in epilepsy. And we try to approach it very scientifically. So, this part is in English. We have another program also that we are sending remotely, which is in Finnish language, which is for nurses (because it's of course important that we also have this kind of activity). And we really want to build up the International League Against Epilepsy, nursing section also to Finland. And this needs to be done in Finnish. But the main program (three days) is in English.
And we really also concentrate on diagnosis of epilepsy, different aetiologies of epilepsy, how we, in a modern way, can detect epilepsy, but then we go also to science, to genetics, to tissue detection after epilepsy surgery, and different ways of doing research. We have also, abstracts, scientific abstracts, an abstract competition. We reward people who are doing science in Finland and elsewhere and, of course, meet together, especially on site.
Important topics also, are different forms of status epilepticus and we are talking about also status epilepticus care pathways. We are going to update the current care guidelines for status epilepticus in Finland. What we already have done: we have been building the care pathway for elective patients in Finland and we are really bringing up how we have the care pathway from the start of the diagnosis to the complex and rare epilepsy situation, and even to the EpiCARE discussions and to the European level. These are very important aspects, so status epilepticus and care pathways.
And I think this is a very important platform for the researchers and clinicians to meet together to understand better also the pathophysiology of epilepsy. So it's not only seizures and treat seizures, but more and more finding out why people have epilepsy. And this will benefit really neurology and neuroscience altogether. I think we need to understand that. And therefore it's beneficial to come to Kuopio Epilepsy Symposium or join remotely.12:31 Torie Robinson
It's from March the 13th to the 15th, again being held in Finland (I'll provide the link to that below this recording). Will you have any patient speakers at this event or is it patient free?12:43 Reetta Kälviäinen
Usually, we do a lot of work with patients: so Patient and Public Involvement is crucial for all our activities. In this case, we have a very crucial involvement of the patient organisation in Finland, which is the International Bureau for Epilepsy chapter in Finland “Epilepsia Liitto”, and the speaker will come from Epilepsia Liitto. So, there is no patient involvement so-much. This little bit also is due to the different kinds of regulations that there are for drug marketing that we need to take care of. But in some other meetings, we really… more and more emphasise, as I said, the Patient Public Involvement and also include it in our research more and more.13:40 Torie Robinson
We hope to see you at this conference in Finland. It's going to be heaps of fun. And again, if you haven't done any work in epilepsy yet, don't let that hold you back because this is one of the most interesting diseases and goes way past seizures alone.
Thank you so much for joining us today, Reetta. It's been lovely to have you and great to see you again.13:58 Reetta Kälviäinen
Thank you.13:59 Torie Robinson
So, I don’t know about you, but the evolving human genome and all that that encompasses; I find fascinating! Thank you so much to Reetta for providing us with a glimpse into this and her extensive work - both in Finland and around the world. To learn more, check out the Kuopio Epilepsy Symposium - you can find the link below this recording!
Again, if you haven’t already, don’t forget to like, comment, and subscribe, and see you next time! -
Reetta Kälviäinen is the Full Professor and Chair of Neurology in the University of Eastern Finland and the Director of the Kuopio Epilepsy Center in the Kuopio University Hospital. Her special research interest is clinical epileptology including identifying biomarkers of seizure activity, epileptogenesis, progression, and drug-resistancy in cohorts of newly diagnosed and drug-resistant chronic patients. These aspects of scientific projects are combined with therapeutic neuropharmacological interventions. She serves in the steering group of the European Reference Network for rare and complex epilepsies EpiCARE (of which Kuopio Epilepsy Center is a member) and co-chairs the Epilepsy Scientific Panel of the European Academy of Neurology. She is the chair of the steering group for the Establishment Phase of Neurocenter Finland.
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The Symposium: kuopio-epilepsy-symposium-2024
LinkedIn: reetta-kalviainen
X/Twitter: rkalviainen
University of Eastern Finland: reetta.kalviainen
EpiCARE: members-of-epicare
FinnGen: https://www.finngen.fi/en
ILAE: reetta-k-lvi-inen
ResearchGate: Reetta-Kaelviaeinen