Part Two: Community Stories of Navigating a Rare Epilepsy Diagnosis

Episode Transcript

Dr. Daniel Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa. This is the Brain & Life podcast.
This week is the second of two episodes in a series where we are touching on a condition called SYNGAP1. It's a condition with mutations in that gene that cause symptoms of a rare epilepsy and also of autistic features and cognitive delay. These two episodes run together. It's best to check out our first episode and then follow through with the discussion with our medical expert and these family stories today.
We're continuing these stories with Vicky Arteaga, and we'll be back with Dr. Aledo-Serrano in the second part of our episode to learn more about the science behind SYNGAP1 and other rare epilepsies.
Next week, we'll be back to our regular programming. We'll bring you more stories from our community, living with other neurologic disorders and updates on the latest science and treatments with interviews with key medical experts.
Welcome back to the Brain & Life podcast. So we're continuing a special series of discussions with families impacted by a condition called SYNGAP1. Today, I'm joined with Vicky Arteaga. She's the mother of three daughters: Violeta, Amelia, and Loles. Amelia's now seven years old and was diagnosed in 2018 at age three with this condition. From the moment of receiving her daughter's diagnosis, her and her family have felt it was important also to reach out to the Latino and Hispanic communities in order to promote awareness and support and seek for a cure for this condition.
Her and her family live on the Florida Space Coast, but her effort to reach and support this illness goes worldwide throughout the Latino diaspora.
Thank you so much, Victoria, for joining us.

Vicky Arteaga:
Thank you so much for inviting me. It's such an honor.

Dr. Daniel Correa:
So I wanted to start out and learn about how your pregnancy with Amelia was as a young mother with Violeta and growing your family with Juan.

Vicky Arteaga:
Well, we had a very normal pregnancy. It was a very happy pregnancy. My oldest daughter, Violeta, she was two years and a half when I got pregnant. So it was a very active pregnancy, very healthy. It was wonderful. We had so much hope about this second child.

Dr. Daniel Correa:
And you started your family with Juan in Colombia, or you were already in Florida?

Vicky Arteaga:
We were already in Florida. We were living here for about 10 years, and that's when we decided to have kids. Yes.

Dr. Daniel Correa:
And how was her delivery and her first days with you and her family?

Vicky Arteaga:
Yes. Well, it was a normal delivery, but she did had her cord on her neck. She didn't need oxygen according to the hospital. She was delivered in Jupiter. And so that was one of the first things that the doctors, later on that I will talk about it, thought that could be a cause of her delays.

Dr. Daniel Correa:
Okay. And had you known any other children who had had cords around their neck, or cord entrapment, during their birth?

Vicky Arteaga:
I did. I met a few families before, so I was a little concerned. She had low tone muscles. She was a little bit different than my first one, so that were some signs there that were a concern. But our pediatrician always said that she was doing fine.

Dr. Daniel Correa:
So generally you were reassured at the start of things.
But you mentioned some things you two noticed. What were the first things you and Juan noticed?

Vicky Arteaga:
Now that we think about it, probably we could have asked more questions. But yes, she didn't sleep as much as Violeta did. She took some times to roll to put her head instead. She also sometimes she had a little trembles. She will jump when she was sleeping.
Those type of things you might think they could be some abnormalities or probably seizures, but we didn't think it was anything to be concerned of.

Dr. Daniel Correa:
And what were your first worries when you started the notice some differences with her to Violeta?

Vicky Arteaga:
She wasn't as active as Violeta was. She always had her hands in her face. She developed a little bit later, so it was hard. She wouldn't stand by herself, to sleep by herself. So those were the first times when I was telling around six months. She's delayed. This was my second child, and that's why I was more aware of the things that were not happening.
I think when the parents is their first child, probably it takes them more time to get therapy. So we early age we moved back to Columbia because of work related. So we moved back around nine months, seven months, and started going to pediatrician, pointed out my concerns. We started doing early therapy, physical therapy, those type of things.
When we started our odyssey of the diagnosis in Colombia and we started going to every single specialist imaging, too. Because I knew something wasn't right around her first year. She started crawling. So she only seated by at nine months old and she started crawling at her first year.

Dr. Daniel Correa:
At that point she was already developing some language, or was she also having a delay?

Vicky Arteaga:
Just a few words. She started having delays as well, just a few words like ah, wow, mom, dad, and then when seizures started at 18 months old. But it took some time. Probably it started before, but we didn't think it was... Because SYNGAP is more when they are eating and is myoclonic eyelets, so she would close her eyes. We thought she was falling asleep so we always thought, oh, she's falling asleep, she's falling asleep. So we never thought it was something.
We had started going to a neurologist and then we start doing the same, the EEG. But it was a short EEG. Everything was normal. MRI was normal. All the basic genetic testing, they were all normal.

Dr. Daniel Correa:
At that stage when still all the tests were normal and you didn't even necessarily know whether or not she was having seizures, did you have a sense? Or know other family members or people who had had kids with childhood developmental delay or any other conditions that cause delay?

Vicky Arteaga:
Not really. We just met the people at therapy. I know the therapist are very nice, but sometimes they could be over empathetic is how I call them. So they will tell you, "No, she's okay. She's delayed, but she will catch up." So they will be very hopeful. Sometimes I feel like probably we just need to dig up a little bit more.
Even the neurologist, they didn't have the answer at the time. We visit several neurologists, but the first one said probably is it was caused because of the lack of oxygen when she was born. That was the first the conclusion that he had because they couldn't find anything else.
I kept asking the questions. I kept going to different specialists. I remember my family. Some of my family would say, "She's okay. Why are you keep saying that she's sick but she's not?" I knew in my gut that something wasn't right.

Dr. Daniel Correa:
That's a challenging perspective and interesting point that you say in some ways sometimes to the level of empathetic reassurance that we can have for parents who are really going to be dealing with a long-term medical condition. Something like this might actually take away from the support that they need.
It sounds like you're suggesting when there really is uncertainty and we don't know that sharing that honestly may help parents in your situation.

Vicky Arteaga:
I agree. I agree 100%. It's good to be empathetic, but don't be over empathetic because that gives you a false hope to those parents that they still don't have an answer.

Dr. Daniel Correa:
What tests ended up giving you more information to help you understand what was going on with Amelia?

Vicky Arteaga:
This is very interesting because at the time, imagine four years ago, there were not many exomes even in the US. We kept asking, "We want a third child." I kept asking, "What if we want a third child, and what else we do we need?" That was the geneticist was suggesting they kept doing more tests, more tests, more tests. They said, "Well, the last resource that we have, but we don't think we need it. Amelia is delayed but she's not as severe."
They said the last resource was having an exome trio for the three of us. But it wasn't being done in Colombia at the time, so it had to be sent to Spain and then come back to Columbia for the results. It wasn't covered by the insurance. We said, "Whatever the cost is, we want to have these results."
So we did that. It took us 45 days to get a result. We moved back to Florida because at the time she was almost three years old seizures are starting to get worse. We knew we were having some challenges finding the right school for her, the IEP with the special needs requirements that we needed. I talked to my husband. We were planning to stay one more year in Colombia. We said, "No, this is important for Amelia. We have to go back to see if we can find more answers in the US."
So we decided to come back. 40 days later we got the result of SYNGAP1. I remember crying all night when I was reading in English some of the few resources that I could find in English about SYNGAP1. It was just heartbreaking because the information was very overwhelming. She was only three years old. I couldn't believe. They were talking about intellectual disability. They were talking about behaviors. They were talking about schizophrenia. There were tons of information there that I couldn't even process. And even though I spoke some English, it was just hard to understand the level of also scientific language that were there.
So that's part of the reasons why we decided to be involved also with the Hispanic community. Just to change that process to the Hispanic families diagnosed with SYNGAP1, that we could have more available information.

Dr. Daniel Correa:
You mentioned early on that she was maybe doing some of the eye movements that you weren't aware of, and the initial tests and EEGs were normal. When did it become clear that she was having seizures, and how did you know?

Vicky Arteaga:
Yes, it became around two and a half year old when the things got worse, especially when they start having drop seizures because initially they were more like fever related. She had a virus. She always had a lot of issues with breathing and some because of her low tone muscle, too. She will have constantly colds and infections and different viruses.
So it was very hard at the beginning. She had her adenoids removed, and she was a little bit better after that.

Dr. Daniel Correa:
So she would have these drop seizures, or I think what many times many people would call atonic seizures. So her body would just lose her tone or lose her muscle attention that helps her sit up or stand up and she'd fall.

Vicky Arteaga:
She would fall. She would just be walking or climbing the stairs up, and she was just fell down. It was very scary at the time.

Dr. Daniel Correa:
Did she have to use a helmet?

Vicky Arteaga:
Yes, she did. She did. When we moved back to Florida, that's when finally we start finding new treatment. That's the importance of having organizations. So they knew more about SYNGAP1 so they could give you some information about what is the best treatment. We started with one medication, it wasn't working.
Then the neurologist was open enough for my suggestions. So it's when you inform parent. SYNGAP is probably is better with this medication, so we can try this first. And then he was like, "Okay, I agree. It wasn't my first choice, but let's try that." So we started there. Now she was a little bit resistant to medication, but now she has three medications and she's control.

Dr. Daniel Correa:
Yeah, I mean you bring up the importance of organizations, whether they're academic organizations, government organizations, or community organizations and research funding organizations like the SRF, to help improve the information that's out there.
I mean, what you encountered, it seemed like from one moment you had to try to take in and process a lifetime of a potentially progressive disease and what that meant for you and your family and with very limited information. It's great that the SRF has really put an effort forward. Not to just improving the resources and information for families in both English, but now also working towards the Latino and Spanish-speaking community.

Vicky Arteaga:
That's right. That's right. I think knowledge, it's power. The importance of saying and telling the parents that they need to be empowered and they need to learn and they need to be educated about what their kids' disease is the only way that they can improve a little bit better.
Because sometimes it's hard when there are such a few patients around the world, now we're talking about around 1,200 patients around the world. The neurologists don't know what SYNGAP is. They don't know how to even write it. They need to know how to write it down and how to put it in the system because they don't know.

Dr. Daniel Correa:
Yeah. Unfortunately, these are challenges that are not necessarily unique to SYNGAP1 and encountered by individuals and families with many different medical conditions. That's why I think learning from families like yours and the SRF and has really pushed forward so quickly in advancement. Not only in the studies and treatment, but also in resources. It's a great resource for all of us.
So at this point, what were the next steps that you took with doctors? You said you came armed with information and empowered by the SRF. That helped you move forward. What were you think were the most important next steps that you took with the doctors, with you and Juan, to help take care of Amelia?

Vicky Arteaga:
It took us one year I think to process the grief. So it took us some time to understand why us to change to why for, and then we got pregnant with our third child. So we got invited to be part of being board member of a SYNGAP Research Fund. I really thought it probably that was not a good idea because I was pregnant at the time. What I was going to do now with three childs? I'm in Florida with not too many family around that could care and support.
But that was the best decision we did. We said yes and we jumped on board. We started to find all the patients in Latin America, the few of them that they were there, finding other families in the US that spoke their language. Even families from Spain joined later on. That was really magical I will call it because it's the power of community and the power of families.
That we are together, we know what we are facing. All the challenges that in the daily face that we have, the feelings, sometimes the guilt, sometimes the fear, doing that. And then we start having some resources in Spanish and having the scientific SYNGAP congress. So we had all the researchers that we had, doctors that spoke Spanish, we had that first also that we are going to have our second round this year.
So doing that, it give us more resources in Spanish. It gives more information to the families. They have that sense of belonging. Belonging in a place that they are welcome and they understand, and they understand all the challenges that we face in a daily basis.

Dr. Daniel Correa:
It sounds like in reality, while you were away from Columbia, that together with the SRF and the Latino community, you guys really grew a new family.

Vicky Arteaga:
That's right.
And when we travel, we try to meet. If I go to Colombia, we had the Colombian family meet up. If I was in Spain last year, we try to meet with the people, the family in Madrid and in Barcelona. So it's so important to meet the families. I know how they are and the kids. It's just more family to us, yes.

Dr. Daniel Correa:
And you mentioned so Amelia's on a few different medications. What are other treatments and symptom management that you guys have focused on that has helped her?

Vicky Arteaga:
Therapies like OT, PT, ST. We have horse therapy. We have swimming. We have ABA, behavioral analysis therapy at home. So we have tons of activities for her in order to improve as much as we can.
Because I know it's very slow. She goes to a classroom with six kids. She has her shadow in her school. It was very important to talk about safety-ness at school setting. All those type of things that you need to make sure that everything is on place.

Dr. Daniel Correa:
So tell us about Amelia now and how she's with her sisters and at school.

Vicky Arteaga:
Well, she's a happy person. She's very silly sometimes. She loves jokes even though she's nonverbal. She speaks around 80 words of English, which is funny because we only speak at home in Spanish. But it seems easier for her.
So the little one that is three years old, she speaks to her sister in English because she thinks it's easier for her to understand. But they are very close. They love each other very much.

Dr. Daniel Correa:
And you mentioned horse therapy. Is that something that just Amelia has been participating in? Does she do it with you or her sisters or any of her family?

Vicky Arteaga:
No, she does it by herself in a program, a special needs program. She does it every other week, and she loves it. It's a 30 minutes ride with her horse, then she can just clean the horse. Is very unique to her relationship with the horses and with the animals in general.

Dr. Daniel Correa:
I think animals and pets are important to many of us, and even more so I think to kids.
For you and Juan and your family, we're talking about a lot of things, a lot of therapies. This is a lot of time costs and financial costs. I mean, I imagine that's a lot for your own family, but many people do all of these things. I don't know, do you have some thoughts about that?

Vicky Arteaga:
I do have a lot of thoughts about it.
One of the things is like how could you balance your life with your other siblings? That has been my biggest challenge as a mom of three. So just making sure that everybody is going to get the attention they need to, but also to understand that there is one that needs a little bit more.
Having a therapist, psychologist, or whatever help is important to also see things from a different perspective and different and professional way, too. To help you through this, not only with your child that needs more attention than the other ones need as much attention as they, too. So to make sure that they also have memorable time and joyful time. Even though with the limitations of having one kid with special needs, making sure that everybody is enjoying whatever activity we are doing that we can do together because it's not always possible.
So how we can make it possible. If we like outdoors and if we like going to the mountains or we like to going to the beach, things that probably is a lot more manageable than going to a restaurant for instance, or going to a fair or going to very loud places. But also how can make sure my other ones have the other activities like tennis and tennis lessons and gymnastic other things are...
But I also tell the families that you have to balance it out. Because sometimes we focus so much on therapy, therapy, therapy that probably we are just compromising other things. So it's just finding the right balance that is going to work for your family financially but also in every way.

Dr. Daniel Correa:
Yeah, it sounds like there's a lot to balance. Also, some extent of accepting that you can't do it all but being present.

Vicky Arteaga:
Exactly.

Dr. Daniel Correa:
Well, thank you so much, Vicky, for sharing everything that you've learned together with Amelia and Juan and your family. And for all that you're doing to advocate for the community with SYNGAP and for our Latino and Hispanic community to have more resources and learn more about this condition and their health.

Vicky Arteaga:
Thank you. Thank you so much for inviting me.
And also that's why we decided to co-found the Sociedad Hispana Enfermedades Raras, SHER. That is going to be live soon. The idea is to help organizations to improve their connections and their information, their resources, in the language to the Hispanic communities.

Dr. Daniel Correa:
Now, stay tuned for more information about SYNGAP1, the SRF, and epileptic encephalopathies as we continue our discussion with our medical expert.
Can't get enough of the Brain & Life podcast? Keep the conversation going on social media when you follow @NeuroDrCorrea and @BrainandLifeMag or visit brainandlife.org.
Wow. Vicky and Amelia's experience navigating the path to find not only Amelia's diagnosis with SYNGAP1 and then working towards management and treatment and just the love that they share in their family. It's truly inspirational.
Now I want to get back to our discussion with Dr. Angel Aledo-Serrano from Vithas Madrid Neuroscience Institute in Spain. He's a specialist and neurologist and researcher advancing our knowledge of epilepsies and developmental encephalopathies, and has been working with SRF to help bring forward new treatment and new science. We're going to continue the discussion that we started last week with him and hopefully really help us all better understand what's going on with this condition.
Now Marta and her daughter Sophia, and also Victoria and her daughter Amelia, are from Colombia and they now live in the United States. What do we know about the impact of the SYNGAP1 diagnosis and condition worldwide?

Dr. Angel Aledo-Serrano:
What we know about these genetic conditions is that they have the same frequency worldwide. So in Latin America, this diagnostic gap is much larger. I have some patients following them by telemedicine from, for example, Argentina, Chile, Colombia, Peru.
Sometimes because they don't have the knowledge or they don't have the experience with these conditions, they cannot ask for genetic testing. They don't have the experience managing seizures or behavioral problems or this kind of situations. We are working on that. I'm trying to help them to spread the world and to gain literacy about neurodevelopmental conditions in Latin America.

Dr. Daniel Correa:
Now, the SRF has also been really pushing and helping move forward research. So how are they helping support research for this condition?

Dr. Angel Aledo-Serrano:
They have scientific committee. Other colleagues are part of field and they are supporting them, deciding new projects to support and also giving new ideas.
Also, they are doing a lot of disseminating strategies, social media with Instagram, with Twitter, with the webpage, with podcasts. That's really, really important. And I know some of my colleagues here in Spain, which we're not very used to neurodevelopmental conditions like SYNGAP1, and they are starting to hear abouts one because of them. So they're doing something very, very valuable.

Dr. Daniel Correa:
That's incredibly important.
So there comes to the challenging question, is there a treatment for SYNGAP1?

Dr. Angel Aledo-Serrano:
That's a problem. What we have is only symptomatic, but it's also important. We have medications for seizures. We have also medications for behavioral problems, which are not very, very effective, say, in everything. We have also medications for sleep or for constipation, so for problems which are causing suffering in these families.
But we don't have specific pharmacologic treatments. We have non-pharmacologic treatments, which are also very, very important. So physical therapy, logotherapy, occupational therapy, so a bunch of therapies which are maybe the most important for these families.
We're now in, I would say, exciting situation where for the first time in history we have new treatments, which are targeting the specific cause, so the genetic underlying condition in development. But we're in a good path in that regard.

Dr. Daniel Correa:
One of the therapies mentioned by several of the families is applied behavioral analysis, or ABA therapy. Tell us about the importance of that in supporting these individuals and their families.

Dr. Angel Aledo-Serrano:
What we know about SYNGAP1 is that behavioral problems is the main drive of quality of life for the parents, for the community around, for the patient. So behavioral problems sometimes are related to speech problems, so they cannot communicate. So then they struggle handling their emotional situations or their frustrations or the limits between the parent and the caregiver and the patient.
So these kind of therapies are helping in this. So it's great that we are improving therapies for behavioral problems for communication. That's helping for the quality of life.

Dr. Daniel Correa:
And a lot of families also get involved in other supportive therapies, hippotherapy, or therapy with horses, aquatherapy, music therapy. How do you work in those into helping support the individuals living with this condition?

Dr. Angel Aledo-Serrano:
They are helping very much. Sometimes we are so focused, we put ourselves the costume of superheroes. We are working and we want every day, every schedule to work with the child and with the adult affected person, we are sometimes forgetting that they have to have fun. Sometimes having fun and having emotional links with the animal, for example in the therapy with horses, the hippotherapy or working with dogs or the aqua or music therapy, this having fun, this emotional distress managing, is helping. They have better routines, they have better sleep, they have better behavioral managing. So this is really important in our routine clinical practice.

Dr. Daniel Correa:
And this raises the importance of the families and the care partners in supporting each individual. As you said, describe them often in a way truly superheroes.
What can we do either as clinicians or even as just neighbors to help support these families?

Dr. Angel Aledo-Serrano:
So I think the most important is to have time for them. So the clinician-family link is so important, so important. Sometimes we are so focused on the drug decision that we are forgetting to have time with them. Sometimes we learn a lot from them from their experiences.
For example, we performed a research study one year ago. It was qualitative approach. In a qualitative methodology, you do interviews with the families with developmental epileptic encephalopathies. They were talking about their experiences, about the diagnosis, the symptom management, the relationship with the healthcare system. What they told us was that only the conversation was a therapy in some way.
So I think to have time to understand, and in this, I don't know how it's in the US, but in general in Europe, consultations are getting shorter and shorter. So this fast food medicine where you have to go so fast with very, very complex problems, it's really, really, really bad for neurogenetic conditions. Because you have to go deeper and have difficult conversations sometimes about behavioral problems, about shame, about isolation, about social functioning, how the couples can handle the problem in the child and still have a romantic relationship between them.
I think that's the most useful of course. Then spread the world, go in social media, talk about it, work on the stigma. So of course we have a lot of things we can do for our patients and for our neighbors in the community.

Dr. Daniel Correa:
It's good to know that we can at least just even give them the gift of our time and our listening.
Now, you and many of the other researchers working with the SRF are doing research into future and possible treatments. What types of treatments are being studied, and maybe how far away are they?

Dr. Angel Aledo-Serrano:
This timing is so frustrating in general for clinicians because we want to have the best treatment strategies as soon as possible for our patients and families. But of course for them, especially for them.
So the development pathway is very slow in general. But I would say that we are in a really, really good situation. I would say because of two factors. First of them is that SYNGAP1 has a really strong community, really strong basic advocacy groups. So then when a drug company want to decide where to invest money, they prefer diseases with organized communities.
Second, SYNGAP1 is relatively common. So as we were saying before, is one of the most common among the rare diseases. So there are many companies in the last few years with interest in SYNGAP, and they are using different strategies for treating the disease.
We know in SYNGAP1 that the problem is what we call haploinsufficiency. This is that we have a copy of the gene which is okay, and we have a copy of the gene which is mutated and is not working enough. So what we can do is to put a good copy of the gene that's gene therapy directly. But also what we can do is to use antisense, or oligionucleotides. That's a treatment which is trying to produce more of the good copy of SYNGAP1. That's another strategy which stock pharmaceuticals and other companies are working on.
Yeah, I hope in the next few years, maybe in the next year, they are saying. But I like to put the expectations in a proper level because otherwise it's very, very frustrating. We will have clinical trials hopefully next year or in two or three years.

Dr. Daniel Correa:
Sounds amazing that we can work with dysfunctional genes in that way. It really brings the sense that we are closer to that level of science.

Dr. Angel Aledo-Serrano:
Yeah, the future is here. Yeah, yeah.

Dr. Daniel Correa:
We know that beyond just getting the diagnosis and starting off therapy with families, it's a lifetime with these individuals and for these families. So are there important considerations for the families of individuals living with SYNGAP1 as they progress through adolescence and become adults?

Dr. Angel Aledo-Serrano:
That's a big question now. Because as I said, I see children and adults. When you perform a diagnosis in a child of SYNGAP1 or any other neurogenetic condition, one of the first questions of the parents is, "What will the future of my child look like?"
We have a big uncertainty on that because what we call the adult phenotype, so the manifestations of the disease in the adults, are poorly understood so far. In this moment, we are studying the SYNGAP1 phenotype with the group of Danielle Andrade from Toronto. I think that data will be very useful.
What we know in general is that seizures are not so important in adults. Of course are cases with refractory epilepsy in adults. But in general it's less important and it's more important the behavioral problems. Also, we know that there are some motor problems. So because of that, we should still work on motor physical therapy. Also, behavioral neuropsychological therapy.
It's important to get genetic testing in adults because all our consultations of epilepsy or intellectual disability or motor dysfunctions are full of SYNGAP1 and other genetic conditions.

Dr. Daniel Correa:
That's a lifetime of love and support and enjoyment with families, but also much caregiver support and care and therapy that's needed throughout their life.
Angel, we truly appreciate you sharing your time, experience, support, and hope for the future of medicine. With our listeners and the community living with SYNGAP1 and all the other pediatric and adult neurologic disorders you help take care of.

Dr. Angel Aledo-Serrano:
Thank you so much for the time and the opportunity to talk about this topic, which is really, really important. Hope to see you soon.

Dr. Daniel Correa:
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Part Two: Community Stories of Navigating a Rare Epilepsy Diagnosis

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