Parenting and Writing While Disabled with Jessica Slice

Episode Transcript

Dr. Correa:
From the American Academy of Neurology. I'm Dr. Daniel Correa,

Dr. Peters:
And I am Dr. Katy Peters. And this is the Brain and Life podcast. Daniel have always wanted to go to NYC for the holidays. Are you planning on staying there? Are you headed elsewhere?

Dr. Correa:
Well, I enjoy the holiday season around New York City a lot, whether it's visiting Rockefeller Center with friends, visiting the city, and just getting out and shopping and seeing the Christmas markets. But around the holidays for us for Thanksgiving, we go to see my wife's family and then we come back to the Northeast to enjoy the holiday season around the area where we live during the work weeks. And then for the winter holidays, we go down to see my sister in Baltimore in Puerto Rico. Our family has a tradition of celebrating so many different holidays during the season. I can't even count them on one hand, but the most important thing is really just getting together, singing, listening to music, eating some of our typical foods and just celebrating together as a family.

Dr. Peters:
I want to go to Puerto Rico for Christmas. It sounds like so much fun. Your family sounds like a lot of fun.

Dr. Correa:
It has been my favorite.

Dr. Peters:
And all that good food too. I'm sure.

Dr. Correa:
You get spoiled.

Dr. Peters:
Oh, I like that. I like that. I always like, and I wonder if you do this also, I like to ask my patients, what are your plans for the holidays? What's coming up? What are you up to? And I also ask their loved ones. It's always interesting. They always have some interesting plans, whether they're going with family, maybe they're going on a cruise. One of my patients is going out to the Georgia Woods. I don't know what, it's just everybody gets to have their own thing to do for the holidays. But I guess the most common tradition really is about getting together with family.
And our guest today is an author that really focuses much of her writing about family and family dynamics in sort of the lens of how she's navigating being a mother and a wife while having a neurologic disability. Her name is Jessica Slice. She explores the challenges and revelations about having a disability and her books have included Dateable: Swiping Right, Hooking Up, and Settling Down While Chronically Ill and Disabled. Definitely interesting. Also, another book called Disability Visibility. In her most recent book called Unfit Parent, which is about parenting and having a disability. We will then discuss the specifics on her underlying neurologic condition called Ehlers-Danlos with Dr. Svetlana Blitshteyn. So very interesting discussion and I hope you check it out.

Dr. Correa:
Yeah, I mean you guys touch on a condition we haven't really had a chance to speak much about and some of the symptoms that are related to it. And please, while you're listening to the show, you can click the link in the show notes and complete our listener survey for your chance to enter a drawing for one of five $100 Amazon gift cards. You can also find the link on the Brain and Life website at brainandlife.org\survey. Your feedback for us is essential to help us grow and improve this program and reach new audiences so that we can all help increase awareness about neurologic disorders and brain health.

Dr. Peters:
Hello listeners and welcome back again to the Brain and Life podcast. Of course, I'm your co-host Dr. Katy Peters, and I'm so excited to welcome our guest today. Jessica Slice to the podcast. She is an author, an essayist and speaker who describes that she writes things and talks about disability. Her work can be seen in the New York Times, the Washington Post, Glamour and the HuffPost and many, many other magazines. When she is not writing, she's definitely talking on many podcasts about the experiences of disabled people and the important parts of everyday life. And these can range anywhere from parenting, dating, surviving and thriving. Her book titles include Dateable: Swiping Right, Hooking Up, and Settling Down While Chronically Ill and Disabled, Disability Visibility and Unfit Parent, which was shortlisted for the J. Anthony Lukas Work in Progress Award. And just yesterday her children's book came out and it's called, This is How We Play. So we're going to learn so much from Jessica today. So Jessica, welcome to the Brain and Life podcast.

Jessica Slice:
Thank you so much for having me. I'm really happy to be here.

Dr. Peters:
We're delighted to have you join us. So I heard you're in Canada and it's cooler there today. Where are you at in Canada?

Jessica Slice:
We're kind of in the middle of Ontario between Toronto and Montreal.

Dr. Peters:
Okay, great. And I know I gave a short introduction about you. Do you want to tell us a little more about yourself?

Jessica Slice:
Sure. I am a 41-year-old mom of two and became disabled at 28. And so there's sort of these two parts of my life. There's the pre-disability and post-disability, and in my post-disability life or with disability life I write and I parent and I take care of my body. And I grew up in North Carolina and Washington DC, lived all around the world and have settled now in Ontario.

Dr. Peters:
So I know you write a lot about disability. Can you just tell us what disability means to you and what it means to other people that are disabled?

Jessica Slice:
So disability, I certainly had opinions about it before I became disabled and then I was sick. I became sick in 2011 and it took me a couple years to get diagnosed and then a few years after that I started to really learn about what disability means. Up until that point, I had had a disability parking placard. I was registered with disability student services at my grad school. The word was kind of around me, but I thought it didn't apply to me. And so then I started to read disability theory and it was reading that where I really started to solidify how I think about disability, which is a group of people for whom disability rights, advocacy benefits.
So if you have a body or mind and the disability rights movement makes your life better, then you're probably disabled. And then I think that definition can be interesting because then if you expand that, everyone's life sort of benefits from the disability rights movement, we all benefit from having ramps in the building or for having accommodations in classrooms. And so then it's like, well, are we all disabled? And then I think it's sort of interesting to think about how the delineation between non-disabled and disabled is actually kind of fuzzy. We all will most likely become disabled at some point in our life before we die and that we all kind of cycle in and out of the definition. And so it's like the longer and the harder I look at disability, the more out of focus it becomes.

Dr. Peters:
And it can change within the times of your lives. I mean, if you just have a simple injury, you break a leg, you're going to be on crutches and maybe that ramp is going to make it easier for you.

Jessica Slice:
Exactly.

Dr. Peters:
Or even if you're someone who maybe didn't have a disability in most of their adult life later on becoming, having a stroke, which some of our patients and listeners, this can happen to them or in my business for my patients with brain tumors, they all of a sudden get diagnosed and have to use things like a walker or a wheelchair or a cane. And I like the idea that it's a continuum and that there are these shades of gray and it makes it just seem that we should be all more welcoming to people with all their different abilities and how they're abled.

Jessica Slice:
Right, right. Yeah, I totally, totally agree. And you talked about how we kind of cycle in and out of it. I wrote a book about disabled parenting and something I was struck by writing that book is that people who give birth often go through a period of disability after giving birth recovery from C-section, recover from vaginal delivery. Both involve a real change in physical functioning. And I think comfort with disability and comfort with our changing bodies benefits all people, particularly those who give birth and have to then live for a period of time in a new kind of body.

Dr. Peters:
You've lived in the United States and now you live in Canada. Do you see any differences between, I guess resources for people with disabilities or accessibility? Is it different from country to country?

Jessica Slice:
There isn't an ADA here. It's governed by a human rights law, accessibility. I will say Canada has been less accessible than the US in general, but I wouldn't say either is doing a great job. There were a lot of places I couldn't go in the US and that friends of mine couldn't go who are wheelchair users. One of my closest friends when I lived in the Bay Area had ALS and used a wheelchair and she couldn't go into her daughter's school when her daughter had school performances. My friend couldn't get in there. What she ended up having to do was people would carry her, but she couldn't move really much of her body at all. So it was a very hard process to have to go park at the door and have people carry her in. And I know when my kid was touring preschools in Durham, we toured 10 preschools and of those eight were completely inaccessible and I never got to see inside. So I wouldn't say either country is excelling at access.

Dr. Peters:
We need to do a lot better.

Jessica Slice:
Come on.

Dr. Peters:
Because someday you're going to have a loved one or you yourself are going to be disabled and you're going to want to have those resources. And I always sort of harken back to my neighbor, he was blind and had a seeing eye dog and just navigating the world with him and understanding where he could go to and what was available to him, it was limited by his ability to see and whether his guide dog could take him there. So I think that we all need to be willing to make things accessible and then do it.

Jessica Slice:
Something I think about a lot is I wonder how much of our fear about thinking about disability is our fear of mortality that we just kind of don't want to think about that we're fragile. And I think about doctors a lot because I wonder if doctors build some comfort with disability because I think you all are confronted with mortality constantly. If you're a doctor, there's no avoiding the fact that these are fragile bodies and these lives are transient. I think for so many people, we want to not look at that. We want to spend as much time not thinking about our fragility as possible.

Dr. Peters:
I think that's totally true. And I guess I will reveal that I'm building a house, Jessica it's out in Hillsboro and we're building this house. And one of the things that I always wanted was I want a ranch because I talked to my patients about steps when they get older and falling and falling seems to take away independence, particularly from my patients. And so I was pretty adamant that we were going to get a ranch. And then we have two offices upstairs and what I tell my husband is as soon as I can't get up to the office, I'll think about retiring, but everything's going to be in one ranch and it's very accessible and there's no slippery tile [inaudible 00:12:28].

Jessica Slice:
Yeah.

Dr. Peters:
Very proactive on this.

Jessica Slice:
That's interesting. Yeah, that makes so much sense because you have to confront the way that body has changed so regularly.

Dr. Peters:
But you know what I learned so much from my patients, they have so many tips and tricks and they've learned to, it isn't just the patient themselves, it's their family a lot of times. They're like, we did this to make it easier for my relative to do X, Y, Z, which I think is really important because you write a lot about family and you just had a book come out, this is how we play. Can you tell us about that?

Jessica Slice:
Yeah, so in 2020, a friend of mine from college reached out and she's disabled too and a mom. And we have kids the same age and said, "hey, what books are you buying that have disabled parents in it? Henry started asking where the disabled parents are and his picture books." I was like, "oh, it's funny. I don't think we have any, but I'll look into it and get back to you." And then around that time my kids started saying, "where's that mama's wheelchair? Where's her wheelchair?" Because to her using a wheelchair at our house is normalized. And so I looked and I couldn't find a single picture book with a disabled parent in it. And I Googled and I looked everywhere. And so then Carolina talked and we were like, "let's write one." And we didn't want it to just be our situations reflected. So we actually did a few dozen interviews with disabled parents and said, "how do you play with your kids?"
These conversations ended up being so beautiful and often emotional because these parents felt like finally my lived reality is being seen and respected and celebrated. And we were so struck by the creativity and the joy behind all this play. And the book has all sorts of disabled people, not just parents, but we took all those stories and wrote a book from it and we were thrilled that an agent wanted to represent it and then also thrilled that a publisher, that Penguin wanted to publish it. And so it came out yesterday, which is about four years after we started talking about it.
And I read it, I've read it a bunch of times, but I read it to my daughter the first night it arrived at my house and she just couldn't believe seeing our family in a book, not exactly but seeing families like ours. And she actually cried from joy for the first time in her life, the night I read it to her and she said, "why am I crying? I'm happy. Is something wrong?" And I was like, "oh honey, no, this just happens sometimes. Sometimes we feel so happy we cry." And I sort of had this feeling like if I do nothing else with my career that I have had done something for this moment to happen, it's worth it.

Dr. Peters:
Well, it's a beautiful book. I'm so excited to look at it myself. And we have a child life specialist here at Duke at our Brain Tumor Center, so I know that they would love to add this to their library for their kiddos and for their parents. And so I think I'm going to get a couple for our library here because we have such a-

Jessica Slice:
Thank you.

Dr. Peters:
We have such a nice program here. And what have you learned like, when you write a book how do you sort of get inspired about a particular topic?

Jessica Slice:
The book I have spent the most time on is Unfit Parent, which comes out next spring. And it's a book that really looks at what it means to be a parent while disabled. And that topic is because it is my daily life and it grew from an essay I wrote in 2019. It was actually the first time I had tried writing. A professor had said, I think you should try writing not just academically but personally. And I had been thinking a lot about how I felt like not a real mom, that I am a mom, but all the moms I had ever seen anywhere didn't look like me and didn't parent like me and never fed their kid while sitting in bed and never, didn't have my version of parenting. I didn't see it. And it made me feel like an imposter that when people talked about being parents, I always felt like I was lying when I said I was a parent.
And it's a really complicated way to feel. And so that is what was taking up my thoughts. And then fortunately, a publisher wanted to buy that book, so I wrote that book on proposal. My agent went to a publisher and they said, "yes, we'll buy this book." And then over the next couple years I wrote it. And again, it's not a picture book obviously, it's a kind of denser combination of memoir and research and interview. But I didn't want it to be just my story. I talked to a lot of other parents and experts and a lot of academic articles and just look at what does it mean to be a disabled parent? I'm really proud of it and I think it does say something sort of new about parenting in general.

Dr. Peters:
So when does that book come out?

Jessica Slice:
April 15th, 2025.

Dr. Peters:
Oh wow. You've got so many exciting milestones, one after the other. Now I was reading a piece that you wrote in the Washington Post, and it sort of hearkens back to that idea of that imposter syndrome. And you talk about a feeling that I was struck when I read the wording internalized ableism. Can you sort of share a little bit more about what that belief and feeling is and what it entails?

Jessica Slice:
Yeah. I mean it's sort of a tricky, part of this is tricky. On the basic level, it's the assumption that I am worse or my life is worse or I do things worse because I am disabled. Before becoming disabled, I would've said, well, of course it's worse to be disabled. It is the step-down from being non-disabled, there's this way we're supposed to be. And then there's this alternative, which is disability, which is a deficiency. And internalized ableism is sort of when you take that belief and bury it and it lives in you, and then that dictates how you think about yourself and how you think about the world and your actions and your capacities. And I think that doesn't, we don't create that belief just from inside ourselves. We create it from messages from the world like going back earlier in the conversation. If I'm not able to go inside my kid's preschool, that's sending a message that it's not important for me to be there and that I'm not worthy of being there.
If someone builds a store that doesn't have a ramp inside that's sending a message. But I think what surprised me and what is true in my own life is that before I was 28, I was a runner. I owned part of a real estate firm in Durham, where you are? Yeah, I was one of the owners at Urban Durham Realty downtown.

Dr. Peters:
Oh my gosh.

Jessica Slice:
And I woke up, and I-

Dr. Peters:
I know the group.

Jessica Slice:
Yeah, yeah. I started in 2009 and I woke up and ran a bunch of miles every morning and then worked all day and went out with friends at night and had this sort of really shiny life. And then for me at that time, my life was kind of not good in a really deep way. I was pushing so hard and moving so fast and kind of outrunning my own reality that it was a bit of a corrosive type of life. And when I became sick in 2011, there were some really, really hard years of getting diagnosed and coming to terms with my body and then years of trying to do enough physical therapy so I wouldn't be disabled.
There was really hard work there. But at the end of it, where I ended up is that I like my life more now and I like myself more now. I am a more honest person. I'm a more present person. I'm patient. I'm able to absorb good moments in my life in a way I couldn't before. I have to spend most of my time in bed. I have to spend most of every day resting. I can't go out above 70 degrees. I have all these restrictions. And even with all of that, even with shrinking down this shiny life to kind of something tiny, I still would choose this life and this version of myself.
And I think internalized ableism is the inability to not look at that clearly and to just assume that this is a bad life or an inferior life. And for some people, I think some people who become disabled do believe it is an inferior life. And I think that's totally valid. I think there's so many reasons to miss an old life, but I think rejecting internalized ableism is saying, I want to at least look at this clear eyed and make that call for myself and make a call of do I like who I am and how I live.

Dr. Peters:
Well, thank you for sharing that and explaining that and sort of your journey of coming out of that imposter syndrome mode and putting sort of internalized ableism in its place, that it has a place. And I just, we've recently on this podcast, we've interviewed some Paralympians and also featured them in the Brain and Life magazine. And I think about them and sort of what they're going through and what's happening in their lives and how being disabled hasn't dampened their ability to bring joy to their life and to bring fulfillment and gratitude, which I think are all very important. And I appreciate your thoughts on this. Now, you surely didn't do this alone. I mean, I feel like you're a very strong person. So I mean, who helped you? Who were your resources? Who were your support?

Jessica Slice:
Well, one, I've had the same therapist since 2013, and I credit her with so much in my life. She's not an expert on the illness or disability, but she taught me to see myself and love myself and value who I am. And then along the way, it's other disabled people who have been doing this longer than I have and who I sometimes say I rest on their shoulders. There's all these who have gone before me and I rely on their wisdom and care and the lessons from other disabled people.

Dr. Peters:
Is there a way that you interact with them? Did social media help? Did maybe a support group help? What was the avenue that you were able to make those kinds of connections?

Jessica Slice:
There's been different seasons. When I was first getting diagnosed, Duke actually had a support group for other people with POTS and then by extension other people with EDS. And that was really useful. And then through my research in grad school, I met some disabled thinkers and one in particular, Julie Raymire. She and I have become close friends. And one thing I would say to other sick or disabled people is if you're in a romantic partnership, it can be really useful to have a friend that you can share the day-to-day details of your physical condition that I think, at least in my current relationship, that made it sound like really temporary. My husband who I share with, who I share with two kids, it is better for us. He knows what's going on with me, but I don't tell him every change or every worry or every new pain. I have a couple friends that I can do that with and I think that's really helpful for us to not put it all on him because we already share a house and kids and so many other things.

Dr. Peters:
So you mentioned love life and dating. We know you're married now, you have two little ones. Can you share some, I guess, because we have some young listeners that are, they're not married yet, but they're in the dating scene, they're out checking things out. Can you give us any tips?

Jessica Slice:
I mean, the first tip I thought of is a little depressing, but it's worth saying. When we interviewed people for our book on disabled dating, we did not interview a single chronically ill or disabled person who had not experienced sexual violence. Disabled people experienced sexual violence at a far higher rate than non-disabled people. And I think it's worth going into dating clear-eyed about that and taking the precautions you can take and also knowing you're not alone. And then we talk about it in the book, I don't know how to say it very fast, but tell people where you're going, get the last name before you go somewhere with someone. And just be aware that the power dynamic in inter-abled relationships in particular can be pretty tricky.
But then the other piece of advice I would say is to believe that you are worthy and to not settle for a relationship that is worse because you think no one will want to date a sick or disabled person. I had a few people break up with me because of my illness or disability, and I look back at those relationships and I'm like, "oh, thank God." Because if someone has a view of life that is so tiny, they can't imagine being satisfied with a disabled person, then I don't want my life with them. I want someone who can have an expansive view of what makes a good life. And so I feel thankful for my husband. And also I deserve a good husband or partner.

Dr. Peters:
Absolutely, yes, we all deserve to have the best partners and to be safe and to live our life. So I appreciate both 0.1 and 0.2, and I think that, and those can really translate to anybody. And it goes back, it harkens back to what you said at the very beginning is this is all on a continuum and this is a gray zone. We all have things that whether our disability is manifested by the fact that we're in a wheelchair or we're using crutches, but it could be a disability. Maybe you have challenges with being on the autistic spectrum and how do you navigate those spaces? What if also there's a mental illness involved? And I have a lot of patients that one of the problems they have is seizures and they get very anxious about being in situations that could maybe lower their seizure threshold. So I think that we can all sort of learn, I'm going to check out these books too because everybody deserves to have a good husband.

Jessica Slice:
You do. Yeah. Yeah. And I think disabled people are kind of this back to the internalized ableism, sold this lie that we would be lucky to get anyone. And that's just not true. It's not true. Every disabled person has something beautiful to offer a relationship, and it's worth holding out to someone, one, you truly love and two, who treats you the way you deserve to be treated.

Dr. Peters:
Be choosy. Be choosy, I think.

Jessica Slice:
Yes.

Dr. Peters:
Absolutely. And choose the right ones. So what would be your hopes and aspirations for people with disabilities? What are the hope that you have?

Jessica Slice:
Well, I think it's a little too ambitious, but what I actually think is that disabled people, because of what we're confronted with and living with, have a tremendous amount of wisdom to offer the world. And so I don't think it's that we, one, I want to be included and go anywhere we want to go, but two, I want our wisdom and our creativity and our sense of community and all of that to be listened to and to be included in conversations about how to make a more just and equitable world. Because I think we just have a tremendous amount to offer the conversation.

Dr. Peters:
I completely agree and I'm reading the list in my questions and I'm getting into sort of a question about how can we be better allies and advocates for individuals with disability. But now I'm thinking about what you said at the very beginning. We all have some type of disability or could have a disability someday. So I think really we need to be better humans. We need to be better humans. We need to know that everybody needs to be involved and included in the room regardless of how you walk, how you talk, how you think.

Jessica Slice:
And it's not just because we deserve it, but it's because the room is better off if we're in there.

Dr. Peters:
Well, I think I'm better off in this room with you because you're just amazing. And I just want to say again, congratulations. Yesterday was the day that This is How We Play: A Celebration of Disability and Adaptation came out. So go to your favorite place to buy children's books and I'm going to get some for our Child Life group here at the Duke Brain Tumor Center. And Jessica, you are just so wonderful. First of all, you're from Durham, which is just great, and we had so much fun talking with you. I just want to thank you for first of all your experience, for your writing, for your advocacy, for you know what, for others with disability, but also for yourself and everything you've done for yourself. And you can check out Jessica, she's at www.jessicaslice.com and all of her books are there. And hopefully we can have you come back maybe when Unfit Parent comes out. Would that be good?

Jessica Slice:
Yeah, I would love that. Yeah, that'd be wonderful.

Dr. Peters:
Okay. And always thank you so much to our wonderful listeners.

Jessica Slice:
Thank you.

Dr. Correa:
While you're listening to the show, you can click the link in the show notes and complete our listener survey for your chance to enter a drawing for one of five $100 Amazon gift cards. You can also find the link on the Brain and Life website at braininlife.org\survey. Your feedback for us is essential to help us grow and improve this program and reach new audiences so that we can all help increase awareness about neurologic disorders and brain health.

Dr. Peters:
Hello, Brain and Life podcast audience, thank you for joining us today. I am of course your co-host Dr. Katy Peters, and I'm honored to introduce our medical expert, Dr. Svetlana Blitshteyn. She's a neurologist who specializes in autonomic disorders, and I can't wait to learn more about this. She's the director and founder of the Dysautonomia Clinic where she provides consultations for patients with POTS, neurocardiogenic syncope, small fiber neuropathy, chronic fatigue syndrome, fibromyalgia and Ehlers-Danlos syndrome, and mast cell activation syndrome, chronic migraine and other neurologic conditions.
She serves as the clinical associate professor of neurology at the University of Buffalo, Jacobs School of Medicine and Biomedical Sciences. Moreover, she has co-authored a popular patient book POTS - Together We Stand: Riding the Waves of Dysautonomia. I've got to check this out. And was featured in the documentary Changes: Living with Postural Orthostatic Tachycardia Syndrome, which is of course POTS. She has been interviewed by numerous media outlets, including US News and World Report, the American Academy of Neurology Journal, Medscape and New Scientist. And today she gets to see us on our Brain and Life podcast. So welcome, doctor.

Dr. Blitshteyn:
Thank you so much for having me.

Dr. Peters:
Absolutely. Absolutely. Thank you for coming. So I just gave a short introduction about you. Can you tell us more about yourself and where you're joining us from?

Dr. Blitshteyn:
Sure. So believe it or not, I am a Buffalonian. I consider myself a Buffalonian because I grew up here and I went to University of Buffalo undergraduate by chemistry and then to Jacobs School of Medicine. And then I went off to Mayo Clinic for my neurology residency and then I came back here. And so I'm a neurologist who specializes in autonomic disorders, which is unfortunately more of a rare type of subspecialty.

Dr. Peters:
Absolutely. Every once in a while I'll see a patient that has some autonomic nervous system challenges. Before we talk about the disorders, can you just give us a quick overview of what is the autonomic nervous system?

Dr. Blitshteyn:
Sure. So the autonomic nervous system is a very important part of peripheral nervous system, and it has also central autonomic controls coming from the brain. And it's the system that controls automatic bodily functions, your blood pressure, your heart rate, your respiration, digestion, ability to urinate, swallow, produce [inaudible 00:35:23], and very importantly, it controls your abilities to stand up and remain standing. It's a system in place to ensure that humans are able to withstand gravity and walk around and stand. And when it becomes faulty of course, we call it autonomic dysfunction. And then when there are disorders with specific criteria, then they're termed autonomic disorders.
Now there is this general umbrella term called dysautonomia, and some autonomic neurologists are not fond of this term and others use it. And remember, this field is very much interdisciplinary where we have neurologists, cardiologists, immunologists, gastroenterologists, sleep disorders, physicians. So I think with long COVID and COVID pandemic, this term, dysautonomia is gaining a lot of ground and is being used. And I'd like to think of that term simply meaning any disturbance or dysfunction of the autonomic nervous system. And I use the analogy of a headache. When we say a headache, you know what that means, but there are so many causes, there are primary headache disorders and secondary, and it could be a migraine, but can also be a brain tumor. So I think in my world, dysautonomia is that, it's a very much umbrella term that implies different things and a wide variety of conditions and disorders.

Dr. Peters:
Well, I used think that's so fascinating. And you mentioned long, and there has been this, I guess, phenomenology of dysautonomia in long COVID. Before we talk about other disorders, can you just tell us a little bit about that because I'm sure it's on a lot of people's minds.

Dr. Blitshteyn:
Absolutely. So every year before COVID pandemic, I had many patients whose autonomic disorder started after some type of infection, whether viral or bacterial, and they were falling into this elusive category of post-infectious syndromes. By all measures in infectious disease field, if you had an infection, it's supposed to run its course, then your immune system clears it and then you should be all good. But every year a small percentage of people never recovered from influenza, mononucleosis, Lyme disease, enterovirus, pneumonia, bronchitis, GI viruses, and they were frequently coming to see me for symptoms such as fatigue, difficulty standing or walking, dizziness, palpitations, cognitive impairment, pain, chronic headaches, sleep disturbance. And so I've been in this field from that standpoint that we knew that autonomic nervous system is very much affected in these patients. So it was a small field with few neurologists practicing that type of specialty. Here comes 2020 and the SARS-CoV-2 virus, and some of my colleagues in this field anticipated that guess what, we will likely be seeing, right?
We'll likely be seeing a number of patients who don't recover. So how did I know? Well, when you review the literature of SARS virus in 2002 and three, that was predominantly affecting Canada and other countries. You know that 50% of SARS virus survivors develop chronic fatigue syndrome dysautonomia, inability to function. And so it didn't take long for my clinic to start seeing these patients. And the initial population were doctors and nurses who had a SARS-CoV virus and couldn't return to their hospital duties when there was an influx of patients and it was a pandemic. And some of them were recognizing that something is wrong with their autonomic nervous system. And as early as April, 2020, it was my first patient who was a medical resident out of the New York City who figured out that he may have POTS. Why did he know it's because his sister had POTS and was my patient.
From then on, I started to see quite a few of those patients with lingering post-COVID symptoms, and that led to the case series that was the largest to date to be published called POTS and Other Autonomic Disorders after COVID-19, we published it in Immunology Research Journal and it's very heavily cited because from then on other researchers and other clinicians have seen the same thing. And then the term along COVID came along coined by a patient who is a PhD, and it took off from there. Then NIH had its term, they called it PASSC, Post-Acute Sequel of SARS-CoV-2 and the rest you know. Now it's a big field and NIH has dedicated NIH recovery clinical trials with billions of dollars to find diagnostic and therapeutic markers and effective therapies for patients.

Dr. Peters:
I was just at the AEN meeting for the fall meeting and they were talking about that, about looking for those diagnostic markers. You're so much on the cutting edge and I'm sure that our listeners are so benefiting. And just so everyone knows, what exactly is POTS?

Dr. Blitshteyn:
POTS stands for Postural Orthostatic Tachycardia Syndrome and is one of the most common autonomic disorders. There are several criteria that are required to make this diagnosis. Number one is you need to have heart rate elevation by at least 30 bits per minute from supine to stanzing in adults and at least 40 bits per minute in teenagers 12 to 19 years of age. Number two, your blood pressure should not change. If your blood pressure falls, then it's not POTS, then it's likely orthostatic hypotension, which is another autonomic disorder. And number three, you need to have symptoms of orthostatic intolerance present for at least three months. Those are the three diagnostic criteria.

Dr. Peters:
Okay, well that's fascinating and thank you for telling us about that. But because I know that this is what you specialize in, you've written some wonderful books and I would encourage everyone to check out your books because I think there'll be a great resource for patients or for caregivers of patients with POTS. But we're going to talk about Ehlers-Danlos syndrome today because that was what our guest essentially is contending with, but also she's thriving in her own way within neurodiversity for her issues. So can you just tell us what Ehlers-Danlos is?

Dr. Blitshteyn:
Sure. So Ehlers-Danlos syndrome is a group of disorders that involves abnormal collagen or abnormalities in other connective tissue types. And there are many different types of Ehlers-Danlos syndrome, at least 13, and many of them are rare, but the most common one is hypermobility or hypermobile Ehlers-Danlos syndrome, and that's the clinical syndrome that has no genetic tests and it's made on clinical grounds. And this hypermobile EDS is often associated with autonomic disorders.

Dr. Peters:
That's fascinating. And I do have a patient that does have that hypermobility associated with this syndrome, and I'm always amazed when she comes to clinic and she shows me her hypermobile joints. Now, you mentioned that this is a collagen disorder and that there are multiple different types. Are there some genetic syndromes?

Dr. Blitshteyn:
Well, they actually are considered all to be genetic disorders, and a lot of the types are transmitted as an autosomal dominant trait, meaning that one of your parents must have that. However, there are cases where none of the parents have it and the patient does have it. So there are sporadic mutations within that result in the syndrome. Now, I think it's very important to point out that hypermobility as a sign, join hypermobility as a sign is very common in general population, and in and of itself does not represent a disease or a disorder. So if you look at athletes, if you look at gymnasts and swimmers specifically one famous swimmer, Michael Phelps, and if you score them, a lot of these athletes score very high on this hypermobility scale that we have called the Beighton scale.
Now, to be considered to have hypermobility, you need to score at least four or higher, and a lot of athletes have a score of eight or nine. Now do they have a disorder? No, they don't. They are just hypermobile. So it's a clinical diagnosis for the most common one, hypermobile EDS. Now we have less common types and some of them carry significant risks. We have a vascular Ehlers-Danlos syndrome and we do have genetic tests for that. And we also have a classical Ehlers-Danlos. And certainly you need genetic tests and a consultation with a geneticist to rule out these disorders because they carry a small risk of vessel rupture, dissections and organ rupture. So it's important to rule these out.

Dr. Peters:
So as a dysautonomia expert, how do those Ehlers-Danlos patients come to see you? What is the reason they're coming to see you?

Dr. Blitshteyn:
Yeah, so very important question. When I started this field, I don't think I knew about hypermobility spectrum disorders beyond what I learned in medical school about connective tissue disorders. I did know there is Ehlers-Danlos syndrome, there are copper genetic disorders, but I didn't think it was associated with anything I do. And that's where learning comes in because back then there wasn't a lot on these comorbidities. There was information and learnings that Mayo Clinic on POTS and other autonomic disorders, but I learned about Ehlers-Danlos syndrome when they started practicing.
And so what we were learning is that at least 30% of patients with POTS have hypermobility spectrum disorder.

Dr. Peters:
Fascinating.

Dr. Blitshteyn:
So some kind of hypermobile plus other things. Now, when you don't satisfy the criteria for hypermobile EDS, what do you have? Well, if you're sick with a lot of the same symptoms, but you don't qualify for all of the criteria, we term it hypermobility spectrum disorders, HSD. So we've noticed in our field, and similarly in the field of chronic fatigue syndrome that quite a few patients or a sizable subset has hypermobility spectrum disorders. And in our field we know that at least 30% of patients with spots have comorbid hypermobility spectrum disorders or hypermobility EDS. And that's how I came to see them, and that's how I came to learn about these connective tissue disorders.

Dr. Peters:
That is, I've never known that and I really appreciate you telling me this, and the scientist in me just has to ask, do we know mechanistically why those are connected? Because that's truly amazing.

Dr. Blitshteyn:
Well, it's so important that we acknowledge that research is only now taking off on these comorbidities. We know they're comorbid, but as you said, why is it happening? Well, number one consideration was and still is that if you have defective collagen or other connective tissue proteins that as you know, since collagen is everywhere and connective tissue are everywhere, then your blood vessels are not going to be as strong as death of a healthy person. So is it possible that the arteries and veins of patients with hypermobility spectrum disorders are more compliant, more distensible, and therefore are not going to contract properly? And when you have a system that doesn't have proper contractibility, guess what happens? Blood starts to pull where it shouldn't, and creating this hypoperfusion state. Now anytime blood is going to pull in the lower extremities or abdomen and pelvis where we have a lot of big veins, especially in women, it's going to take away blood from the heart and the brain creating a state of hypoperfusion of the organs including cerebral hypoperfusion.
So one plausible mechanism is that it creates a state of abnormal perfusion and abnormal blood flow. But I don't think it's the whole story. I think the story is going to be much more complex and it's going to likely involve the brain, which is my area, which is you see my papers pushing a lot on the brain and calling my colleagues in neurology to pay attention to parts hypermobility spectrum disorders because the brain, I believe is also abnormal in these patients. And how do we know that? Well, there is a high degree of comorbidity, especially neurologic and autonomic in this patient population. The number one comorbidity by far are headaches, chronic headaches, chronic migraines. There are other ones.
There is neuropathy is very common, dysautonomia is common, sleep disorders. You also see some evidence that there are autistic spectrum disorders and ADHD common in this patient population of hypermobility spectrum disorders, CMJ, mechanical spine problems, early onset degenerative disc disease. You can also have altered CSF flow because dura is not exactly normal. Dura is also connective tissue, and if you have abnormalities there, you are more likely to get low pressure headaches and high intracranial pressure and CCI, craniocervical instability, and medullary compression syndrome. So the scope is so wide. Right now we just recently finished a special issue for frontiers in neurology on connective tissue in neurology. We had a lot of excellent submission. This field is very much developing.

Dr. Peters:
I'm so excited for this field and I'm going to be paying attention. Totally, I think you've turned the light bulb on. So for our patients with Ehlers-Danlos, you mentioned so much in regards to collagen and we talked about the mechanism now. Are there treatments available for those patients?

Dr. Blitshteyn:
So as you know, when it comes to genetic disorders, we're very short on treatments. However, we need to still diagnose these patients correctly because there are a lot of symptomatic treatment options starting with treatment of dysautonomia, which is comorbid, treatment of headaches, neuropathic pain, sleep problems, and also preventative care. If someone is diagnosed with classical EDS, they should be monitored for potential risks of carotid dissection, aortic aneurysms and other things. Same for vascular EDS. There are precautions for young people when they get pregnant. There are certainly, pregnancy is not a country indication for women with hypermobile EDS the most common type. But we'd like to know ahead of time because there are even labor and delivery risk, like the risk of early premature rupture of membranes, fast labor, obviously problems with healing after a C-section, potentially higher rate of pregnancy-induced hypertension. So over a course of a lifespan, many people are completely undiagnosed because their doctors are not aware that their patients are having a hypermobility spectrum disorder.
And while there are no genetic therapists, it's very important to diagnose and manage these conditions. Now, remember that those are genetic conditions, so if you have one family member with this disorder, likely there are others. And how I have families is when let's say a teenager has POTS and we talk about hypermobility, all of a sudden, for example, the mom says, "oh, I've had the arthritis since my thirties. My body hurts. I was diagnosed with fibromyalgia", and that's what I have. And a lot of these patients are misdiagnosed with fibromyalgia, chronic fatigue syndrome, anxiety, depression, and many other things. So it's not unusual for more than one family member to have these problems within their family and not know about it.

Dr. Peters:
Oh my gosh, you have opened our eyes and I am paying attention. Audience pay attention to this. This is really fascinating stuff. Dr. Blitshteyn, this is, I hope you can come back and talk to us more because I feel like we could talk on and on about this. And I do think we are at the cusp with smart people like yourself that are really going to think creatively about this field, and the next step is going to be really helping our patients. So thank you again for joining us on the podcast.

Dr. Blitshteyn:
Absolutely. I'm so happy to be here, and I think we just scratched the surface. These fields are very complex and I'm always happy when my neurology colleagues and my patients get educated on this feed.

Dr. Correa:
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Dr. Correa:
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