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Jill Brook: Hello fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Clare. Clare, thank you for being with us today.

Clare: Thank you so much for having me. I listened to this podcast for a long time, so this is really an honor.

Jill Brook: Oh, well we're so happy to have you. So for starters, can we just get like Clare 1 0 1 so that people can kind of like get an idea of who you are and where you are?

Clare: Yeah. Um, so I am 24 years old. I just finished my first year of law of law school. I am from Rhode Island and, uh, but law school's in Boston, so I kind of go back and forth between the two.

Jill Brook: So law school sounds intense. What was your first year of law school like?

Clare: Well, that's accurate. It, it, it, it was, it was very intense. It was, um, I actually had a lot more fun with the first semester than I expected. I really expected to prefer the second semester better, but the [00:01:00] first semester you just kind of come in and that's when you have all the adrenaline and it's new. So,

whereas in the second semester, you're a little bit more burned out, but it's still fun. I still really enjoyed my second semester, but it, it's, it can be exhausting. Yeah.

Jill Brook: Yeah, I bet. Okay. So besides ambitious, what else should we know about your personality? How would your friends or family describe you?

Clare: Yeah. I mean, ambitious is good. I, I think I, I would say I'm driven. I'm actually rewatching Parks and Rec and I, I'm like, maybe I'm a little bit of a dialed down version of Leslie Knope if I, I, I hope I'm as selfless as she is, but other than that, maybe it's a fair comparison.

Jill Brook: Okay. And what do you like to do when you're not studying law?

Clare: I don't get much of that free time. I'm on the CHOP protocol right now, so I like to work out, take walks. Uh, when I'm back home I like to hang out with my cat, Amy, and um, watch TV and baseball.

Jill Brook: Oh, excellent. I [00:02:00] know that we spoke a little bit before we started recording and um, I don't know, I know you have some things going on besides just POTS, but I don't know if you've had a life before POTS and friends entered, or have they always been in your life?

Clare: Yeah, it, that's the thing. I, I don't have a clear trigger like a lot of people do for the POTS. So, so I've had, I realize that I've had autonomic symptoms going back to at at least five years old. So, it's kind of hard to tell what was like, so I have epilepsy, right? So it's kinda hard to tell what, what was epilepsy, what's the medications and when the POTS came in.

So, like, for a long time I actually thought that my fatigue was from epilepsy medication, so that's why I didn't go to the doctor for it for a really long time. And then only when I started having orthostatic headaches did I think there might be [00:03:00] something else in play. Um, so yeah, it's kind every, everything's just kind of a blur.

There's really no before and after, 'cause I've always had something going on, whether it be side effects from the epilepsy meds or the POTS or something, something else.

Jill Brook: Wow. So can you tell us more about epilepsy, because I know, I don't really know very much about it at all. I don't know if that's something that you're born with or if it starts early and can, can you just talk about like the basics of what that is?

Clare: Yeah. Um, so there are many different types. Epilepsy and POTS actually share a lot in common, I feel like, because they're both really umbrella terms for lots of different causes. And, and then all they share is what, the doctor ends up seeing, which for epilepsy is abnormal electrical activity in the brain,

and for POTS, it's a fast heart rate when standing up. But they both have different causes [00:04:00] amongst individuals. They're both very little known. You hear about 'em a lot, but you don't really know them. So in my case, mine is genetic. Not inherited though. It's a genetic what we call de novo mutation, meaning I didn't inherit the mutation from my parents.

It happened when, uh, the embryo is developing, I guess. And so you can, uh, get it genetic, either inherited or de novo, or you can have something like post-traumatic epilepsy. Or you can get an infection. There are lots of different causes of epi of epilepsy. But mine is a, a mutation in the PCDH19 gene, which

some genetic epilepsies are referred to as developmental epileptic encephalopathies, which means that you have seizures and then you also have a developmental disorder, and it's unclear [00:05:00] to the physician the direction of that causal relationship. So they, they could be independent of each other, both coming from the genetic mutation, it's not entirely, uh, clear the direction of that causal relationship.

So when, when you have both a developmental disorder and epilepsy usually have develop developmental epileptic encephalopathy, so some PCDH19 cases are considered DEEs, as we call them.

Jill Brook: So what are your symptoms with the epilepsy?

Clare: Yeah, so I kind of like to think that the mutation gives rise to everything. So, all my conditions, including POTS, I think are technically symptoms of the mutation. So, there is the epilepsy, mine is, um, before I only had what, I use the old school terms 'cause I've had it a long time. So I've, uh, I've had [00:06:00] simple,

partial and complex partial seizures. Simple means you don't lose consciousness. They're just auras. Complex partial is you lose consciousness, but you don't, you don't convulse like you see with tonic-clonic seizures. And then eventually I did start getting gran mals, which are tonic-clonic,

same thing, where you, where all your muscles go rigid and then you start spasming.

Jill Brook: It painful when you have a seizure?

Clare: Not during. This is kind of weird. Uh, my epilepsy is probably the disorder of mine that I probably have the least problem with because it's the least painful, because I'm not conscious. So everyone else is kind of seeing it and it's very painful for them to watch. But for me, um, usually an aura turns in, into a seizure

where I lose consciousness and I actually prefer the more serious seizures 'cause I'm not aware of them, so I'm not experiencing any of that pain. But when you wake up, it can be unpleasant if you've, you know, bitten your tongue or [00:07:00] after a grand mal, your muscles can be sore. But yes, ironically with epilepsy, the more serious the seizure is, the better it is for me and the worse it is for everyone else, if that makes sense.

Jill Brook: Yeah, I get it. And like how young did that start for you and how long do seizures last and how often are they.

Clare: I had my first seizure at 20 months old, so I was just under two years old. And they usually last under a minute, but an important characteristic of PCDH19 epilepsy is that the seizures cluster. So, things can get quite serious. If, you know, uh, you have multiple seizures in a very short amount of time, that can be very dangerous.

So, uh, that's why I have, uh, rescue medication for someone else to administer to stop the cluster. So, 'cause eventually it can turn into something called status epilepticus, [00:08:00] which is a real medical emergency. I've never experienced it, thank, thankfully, but it's where you have a seizure that goes on, a single seizure goes on for either longer than five minutes or, uh, you have multiple seizures without regaining consciousness.

Jill Brook: Wow. Okay. And so you're saying, so this genetic variant that you have, this is actually the least painful thing you have.

Clare: That is correct. Yes.

Jill Brook: So what does it do?

Clare: So, when I was going into elementary school from a kindergarten, uh, my teachers were like, eh, maybe we got some learning difficulties going on. So eventually I got diagnosed with ADHD and, uh, nonverbal learning disorder.

And my parents were like, I'm not sure that's it. And they kind of kept pressing my neurologist and he was like, no, no, no, she's fine. Turns out I wasn't fine. I got diagnosed with autism at, uh, at age 15. So I have a huge, uh, discrepancy, what they call [00:09:00] splinter skills, like, my visuals

spatial learning is not very good, but I have very, very good verbal comprehension. So, there's that. So that happened and then, wow, my teens were big time for me, huh, because, so that was, that was age 15. Right. And then also age 15, I was like

Mom, I'm tired a lot, you know. And she's like, oh, maybe you're iron deficient. We'll take you to doctor get anemia test. Without us even you know, asking her to do it my pediatrician also sent off a TT G test, which is the test for Celiac, and that came back sky high. So it turned out I had Celiac and that's what was causing my fatigue.

Um, so I got diagnosed Celiac and then ironically, that is when my stomach problems got worse and I got diagnosed with IBS. So I have IBS too.

Jill Brook: So like you found out you had Celiac, you gave up wheat, and then your stomach got worse.

Clare: Yes, well, wheat, barley, and rye. But yes. Um, yes. [00:10:00] After I got gluten out of my diet, then the GI problems became more apparent, which is interesting because on an endoscopy, everything looks fine now.

Jill Brook: So, so POTS still had not entered yet.

Clare: Yeah. I mean, not to my knowledge, right? I mean, like, I found some medical records back from when I was like five, and there were autonomic symptoms on it, but my parents had just assumed that that was due to the anti-seizure meds.

But they continued throughout most of my life, so it probably wasn't that. And yeah, so in college so basically up from third or fourth grade until junior year of college, I was on Keppra, controlled my seizures quite well. But it really did a number on my mood. So, when I, when COVID hit and I came home from college and, you know, was doing school online, I was like, this is the perfect [00:11:00] trial to, you know, be in a safe space and uh, go off the Keppra and see what happens.

So we went off the Keppra, didn't work, had seizures. Went onto Keppra's cousin Briviact, basically the same thing, but better specificity. Didn't quite work either. I was starting to get very fatigued and, uh, and the mood stuff didn't quite improve. And in the, in, in the process of all this, I'm doing my own research, right?

So I'm, I'm like, eh, I'd really like to find a cause, you know, I've been on a search for a cause for years, and I come across this condition on the Epilepsy Foundation website and I'm like, wow, this really fits me. I really think that's what this is. And so I got an appointment at Boston Children's, their epilepsy genetics program. And by the time that, I [00:12:00] had been on Briviact and stuff, the results came back with the mutation. I kind of knew by then for doing my research and the doctor said, so the, one of the best medications for PCDH19 is Clobazam, followed by bromide, which is not used in the United States. And then I think Keppra. So I'm like, okay, Clobazam is really my best shot.

So when I was in college, I switched from, uh, a Briviact to Clobazam and that's what I've been on since then. So, and then that's after that is when I noticed the orthostatic headaches. But the thing is, seizures and medications for them can cause fatigue. So it's kind of hard to figure out what was the POTS fatigue and what was the medication fatigue, honestly.

Jill Brook: Yeah. And then, so did you realize that you had been kind of POTSy all along, or did the POTS come along [00:13:00] suddenly?

Clare: Definitely not suddenly. I mean, it's, you know, things just blended so much together there. I had some serious seizures during this time period. So I think that one of those seizures like may have been a breaking point in the system or something, and maybe that triggered the POTS, but, um, I don't know.

I just remember being like, man, is this gonna be my life? Like this level of fatigue from the medication. And 'cause I would come home and lay down on the couch 'cause I had a headache and so I called them fatigue headaches. I thought everybody got these. And then I asked my dad, Hey, uh, do you like when you get tired, do you get headaches?

And he says, no. And I'm like, oh wait, maybe there's something else going on here. And I'd been aware of POTS for, I don't know, a while. Just like as a thing, but I didn't really think it applied to me. And I was like, I'm just going [00:14:00] to get, you know, a heart rate blood pressure monitor from CVS and rule this out.

And then if I rule it out, we know it's the medications and yes, this is the rest of my life, but maybe it doesn't have to be. So, and then the numbers were surprisingly consistent with POTS and I was like, oh, wait, no, I, there's hope here.

Jill Brook: Oh, okay, so, so then did you take that to a doctor and did they follow up?

Clare: Yeah, I performed measurements on my, so I, I, I basically did a active standing test on myself every morning for weeks. And I kept, and I kept all the data in a table and I took it to my primary care doctor and she was like, oh, wow, okay. Like, like the, she totally took me seriously on the data, but you know, she, she,

she's like, I'm not a specialist. So like I, she, she didn't feel comfortable doing, she wanted to collect more data, so she, we did a holter monitor that came back normal and, [00:15:00] but she was a, she, she knows some stuff, but she was also like, eh, your numbers are a little, your blood pressure's fine. So I wouldn't put you on salt. In my head I'm like, what?

Like, I, I'm pretty sure that's wrong, but Okay. But the real thing was the, he was the migraines. So I already have a neurologist, so he kind of handles the migraines. So, and then I was lucky I only had to wait three months to see an autonomic specialist. So, um, which by these times is really good

wait time. So I mean, it felt like eternity, but also it was not, I mean yeah. So, uh, my primary care doctor is really just ruling out other things. And that kind of enabled by the time I saw the autonomic specialist to be like, yeah, I'll order autonomic testing and we can start treatment.

And that's what he did. And the, the first time, that was actually the first time I ever passed out [00:16:00] was on a tilt table. So I was like, what the hell is going on? Wait, is this what it's like to pass out? Because I, I think my experience has kind of flipped for most people. Most people get an aura and be and be scared 'cause they don't know what's going on.

But I would be with auras, I'm like, oh, here it comes. Alright, let's get the medicine ready. Bye, bye guys. Bye for a few seconds. Whereas with passing out, I was like, oh my God, what's going on? I don't know what this is. So it was a completely, yeah, I, I'd say my experience is kind of different from that perspective.

Jill Brook: Like an expert at losing consciousness in different ways.

Clare: Yeah.

Jill Brook: Oh man. Okay, so once you had a POTS diagnosis, then did that mean that you could do some things that helped a lot?

Clare: There hasn't been one thing that's like helped massively. I think it's a whole bunch of things to together that helps. So, I, I did have some trouble with exercise, not to the point where I couldn't do it, but just where [00:17:00] it, it would, it would massively fatigue me. So, starting the CHOP protocol really helped.

I have never lasted this long on a treadmill. It's been great. So I'm hoping to be able to run outside eventually, that'd be great. And I think, you know, the electrolytes, they, you know, they help in some situations. I'm like, wow, I really just need some salt then. And then in others, they really just maintain the status quo.

So we're still figuring out treatments. I think our next step's gonna be a volume expanding agent. So that's probably my guess, because, yeah, it was cortisol levels and other hormone levels were found to be low in PCDH19 patients. So I think that my renin aldosterone system, um, may have been affected by this.

So that might, might be causing some volume issues [00:18:00] because the issue does not seem to be vasoconstriction that much.

Jill Brook: Okay, so tell me more about how this affects law school, if at all.

Clare: Oh yeah. To be fair, um, people have been really great about it. The dean for, uh, who handles accommodations put a recliner in a private room so I can go there whenever I need to rest or if I need to put my feet up while I do homework. But it is still very exhausting and I

remember wanting to write something short for the law review, uh, online forum, whi, which I did, but they were like, oh, we can't promise publication. And I'm like, that's fine, but the thing is I need to conserve energy and time. So like, you know, I can't work on something only for it not to you know, pan out.

I just can't. So basically I have to be very deliberate with my energy [00:19:00] and time. And I was like, so if I, you know, work on this and, you know, make it good, will you publish it? And they'll, and they were like, yeah. And, and then it eventually did end up getting published. But you do, you do have to be very deliberate with your scheduling and your time,

for sure.

Jill Brook: Yeah, I understand that. You know, it's funny because my husband is the kind of person who, he likes to start a thousand projects and he

doesn't care if they actually get finished or not, because to him it's just fun to start projects. And I'm always a bit like you, I'm like, uh, wait a second, I'm not sure I'm gonna commit to starting things that aren't gonna actually like, get finished or have a purpose.

I'm a little, little more, um, yes, careful with...

Clare: Exactly. Yeah.

Jill Brook: ...with where the energy goes. Yeah. Um, do you know yet what kind of law you want to eventually pursue?

Clare: Oh man. Like every time I think I know I end up getting pulled in a different direction, [00:20:00] which is, I mean, this early on, that's not a surprise. You know, I went in thinking definitely disability rights and then I remembered how much I love constitutional law. I'm like, oh, I could totally see being a constitutional law scholar and I'm taking health law this semester,

and I'm like, oh man, I could totally see being a health law. I, I mean, it's basically, I'm rediscovering my love for like all the different types of law I love. You know, disability law, health law, constitutional law. So maybe one of those things. Yeah. Yeah.

Jill Brook: Can you just give us an idea, like what kinds of things do you study in health law? Like I didn't, I didn't even know that that was like a thing.

Clare: Oh yes. It's, it's a very broad range actually. Our course in health law is really a survey to all the different types of things you can do. So, our first class is about how we we have the highest percentage [00:21:00] of what we spend as a country, the high, the highest portion of that spending on healthcare among, you know, wealthier nations and some of the poorest outcomes.

So, okay, what's happening with efficiency there? Our reading also discussed moral injury among physicians, which I found really interesting.

Jill Brook: Oh, can you, can you talk about that? What, what is moral injury to physicians? What does that mean?

Clare: Yeah. Um, so basically given how the system is set up, uh, in a very business-like style, physicians are not able to provide the level of care to patients that

they expect themselves to provide, or even that the patients ex expect them to. So they're constantly in this situation of expecting, you know, themselves to do better and then not being able to do better. And it's just feeling like this person deserves way more than I'm giving them. And eventually that can really take its toll.

Jill Brook: [00:22:00] I think that explains why a lot of doctors in our areas of complex medicine end up leaving the normal system and going and starting something which doesn't take insurance, which is a real huge bummer, but it's the only way that they get to take more than 10 minutes with each person.

Clare: Oh, that's absolutely, that's absolutely right. I mean, the frustrations caused by insurance. Like I was just dealing with a prior auth and so was my doctor. Like, there's that type of stuff. There's, um, record keeping. Uh, in the interview they mentioned that physicians, you know, have to look away from the patient and type in about

the interaction and one physician was like, I could have, you know, done this way shorter, but instead I have to justify this for billing purposes. So, um, yeah, there is, I, I think this is something that I've heard a few other disability rights advocates kind of, disagree with me on. I know of a [00:23:00] disability rights advocate who

is not a fan of doctors and, and or the medical profession. So I've heard that stance because of all the medical gaslighting she experienced. And whereas I've had a really good relationship with doctors and I've seen the strain that they're under. So, I am very pro medical doctor.

I think we just kind of have, yeah, like it, it sucks that they miss things in patients and stuff, but they're also under a lot of pressure. So it's kind of a difficult situation. Like I'm very lucky to have the primary care physician I did, who believed me, but my pediatric neurologist was a pretty good example of a doctor not believing you. He didn't want me to get genetic testing, he just wanted to throw stuff at the wall and see what stuck.

So, but that was really from his training. It's not like he's a bad [00:24:00] person. So anyway, people are products of the environment they're in and doctors are in a really bad environment sometimes.

Jill Brook: Wow, that's so interesting and I'm so excited that you're able to, to pursue law school and that you love it so much. And so do you feel like kind of having all these experiences has changed how you look at legal things.

Like do you think you'll be a different lawyer than you might have been had you never had any health issues?

Clare: Oh, I don't think I would've been a lawyer. I don't think I would've gone to law school if it weren't for my health issues, actually. I don't know where I would've ended up. I gotta give my pediatric neurologist credit for this, you know, like I, I, I, I was freaking out about my future and he handed me a pamphlet on people with epilepsy.

And while this is disputed, the pamphlet listed Chief Justice Roberts as someone with epilepsy. And so I got really into Supreme Court stuff. So I got into constitutional law before I got into [00:25:00] disability rights law, but the reason I got into disability rights law is 'cause I was discriminated against. So yeah, I would not be in the law and I would not have my, the focus on the three subjects that I do within the law if it weren't for the disabilities.

Yeah.

Jill Brook: Okay. Fascinating. So is there anything else that you want people to know about living with kind of this intersection of stuff.

Clare: Yeah, I, I mean, I think the thing that frustrates me most is the lack of study around it, because medicine, understandably, is very segmented. I deal with this, someone else is gonna deal with this. And then they don't see the connections that play between the comorbidities. I, you actually gotta kind of commend POTS specialists for making the connection between EDS, MCAS and POTS.

So good for them. But we're not seeing too much of that [00:26:00] in epilepsy. They don't really study anything past the brainstem. So in PDCH19, I'm like, can you guys please do some something on dysautonomia? And they are not. So, I would really like for epilepsy researchers to look past the brainstem because parents of patients who have DEEs report autonomic symptoms.

There's a connection between dysautonomia and epilepsy that is not talked about. So we need more. Oh yeah, we need a lot more studies on it.

Jill Brook: You're saying just the patients talk about a lot of autonomic symptoms?

Clare: Yeah. So, um, there was this study done by the wonderful Dr. Ann Berg, uh, who is based at Northwestern. She. Did a study of patients with developmental and epileptic encephalopathies, um, or DEEs, which [00:27:00] encompasses stuff like Dravet syndrome, Lennox-Gastaut, probably some Rett syndrome there too. PDCH19 is not very well represented.

But she took those patients and asked, they were very young, so she asked their caregivers about autonomic symptom burden and behavior, stuff like that. She found, they, they and, and she found, um, pretty significant autonomic symptoms in the patients. So epilepsy patients do have autonomic symptoms, but there isn't, there are not at, there's not adequate research to be, if we're being fair,

Dr. Berg's study was narrative and, you know, parent reported so. We need more studies measuring, you know, we've had, uh, what do you call 'em, heart rate variability studies and stuff. But, uh, we, no one's looked at the connection between epilepsy and POTS or epilepsy and orthostatic hypotension, or actually any of these listed dysautonomia [00:28:00] disorders.

Jill Brook: Yeah. And you know, it's interesting 'cause we've had a number of patients on the POTS Diaries, and I've known a number of patients who had seizures

as part of their POTS, but the way they described them to me was non-epileptic seizures.

Clare: Yes.

For sure. And yeah, so it, they used to be called, well, I don't, they still might be called this psychogenic, non-epileptic seizures. They were thought to come from, you know, someone's stress or something and because the seizures wouldn't show up on in EEG, which measured elect brain electrical activity. So,

I personally do not think they're all entirely from psych, psychological distress. I think, and EEG's not perfect. So maybe it's just not picking up on seizures that are happening in deeper structures in the brain. There's a lot we don't [00:29:00] know.

Jill Brook: I'm sorry I'm laughing. But yeah, that just sounds like so classic. Well, our one test that we have doesn't catch it, so it must just be anxiety.

Clare: Yes. Yeah, it is kind of, it is kind of like that. Yeah, so, and also I think part of the reason PDCH19, despite being one of the most common genetic causes of epilepsy, I think one of the reasons it's not studied as often as other rarer causes, is that it primarily affects girls. So, um, boys can get that mutation, but interestingly it's girls who suffer worse outcomes if they have the mutation.

So, I mean, is there, is that a reason? Maybe. I mean, I just find it hard to believe that's one of the most common mutations and HA is one of the least studied, so...

Jill Brook: is it known what the mutation actually does? Like what, what the effect is in the body at a mechanistic [00:30:00] level.

Clare: This is exactly why we need more research. It, so it is known that the PDCH19 protein has many downstream effects, uh, with respect to the estrogen receptor maybe, but also about cell shape and synapse, or axon integrity, but really it's about synaptic connection because it happens is you have one neuron of PDCH19 protein, you have another, and then they connect it out of synapse.

And if you have a neuron with a PDCH19 protein, one without, that connection is messed up in some way. So there are a lot of, um, studies connecting stuff like cell migration, um, and cell structure. I really wanna talk about this pathway, but that's really niche. So there's very niche pathway that has to do with cell structure that gets talked about a lot.

Jill Brook: And I'm sorry to [00:31:00] these medical question on you, you just so knowledgeable.

Clare: Yeah, well I, I've read probably every PubMed article on it, 'cause I was trying to, you know, figure out what the heck was happening to me, you know? Yeah.

Jill Brook: Yeah, and it sounds like you did figure out a lot of it all by yourself.

Clare: Well, actually humble brag, but yes, I did figure it out all by myself because my, my pediatric neurologist did not wanna go there. He did not wanna figure out the cause, but I did. So I just kind of kept searching, you know, I got my mom's medical records so I could see if there was anything wrong with the birth.

I ruled out birth causes, you know, a lot of people get hypoxia. I ruled that out. So I was like, the only thing left is a genetic cause. And then that's when I started looking at different genes. So yeah, I, I, I did, when I called Boston Children's, I was like, I think I have a PDCH19 mutation. And they, when they came back, the doctor was like, just as you thought.

And I was like, that's right. Just as I thought. Yeah.[00:32:00]

Jill Brook: Wow. Well good job. Good job. So like where does POTS fit in your sort of range of things of you know, is it high on your list of things that bother you relatively or low or?

Clare: I would say it is the pri my primary concern right now because my epilepsy is fully controlled now, so it, that's really not even a thing as long as I take my meds. So we only have a week between semesters, so I was completely crashing. So I kind of had a, a POTS flare this week and then it was made worse by getting gluten and yeah,

so, um, the POTS has always been my number one concern for ever since I got on Clobazam, uh, POTS has been my number one.

Jill Brook: Okay. Okay, so speed round. We're gonna ask your poor POTSie brain, even though it's not getting enough oxygen to say the first thing that comes to your mind. What is your [00:33:00] favorite way to get salt?

Clare: Either gluten-free pretzels or Vitassium capsules.

Jill Brook: What is the drink you find the most hydrating?

Clare: If I need some sugar, then Gatorlyte, otherwise Nuun.

Jill Brook: What is your favorite time of the day and why?

Clare: I would say evening because as an autistic person, I love routine and I do the same thing every evening. It's quite comforting.

Jill Brook: Where is your favorite place to spend time?

Clare: Uh, my parents' house 'cause I have them and my cat, Amy, and the dogs and it's really nice place to take walks.

Jill Brook: Oh, nice. How many other POTS patients have you ever met face to face?

Clare: Two. When I started, uh, the Disabled Law Student Association, two of the people that showed up had, uh, POTS and one of them actually had the triad, so...

Jill Brook: Oh we'll be represented in the future legal world.

Clare: Yeah, definitely.

Jill Brook: What's [00:34:00] one word that describes what it's like living with a chronic illness?

Clare: Exhausting.

Jill Brook: What is some good advice that you like?

Clare: Just take things day by day.

Jill Brook: What is something small or inexpensive that brings you comfort or joy?

Clare: Uh, my cat, Amy.

Jill Brook: Who is somebody that you admire?

Clare: My parents.

Jill Brook: Do you wanna say why?

Clare: Well for very different, I mean, my, my Mom is probably one of the most hardworking people I've ever met, and she's easily the most empathetic and selfless person I've ever met. And my Dad is equally hardworking and he's just kind of amazing at never letting anything get to him. And he's very wise.

Yeah.

Jill Brook: Aw. I'm happy that you have that support.

Clare: Me too. Yeah.

Jill Brook: What is something that you're proud of?

Clare: Getting through my first year of law school.

Jill Brook: [00:35:00] Yeah. What is the toughest thing about POTS?

Clare: I don't know 'cause there's so many hard things. Probably the fatigue. Yeah, the fatigue. Yeah.

Jill Brook: What is an activity that you can enjoy even when you're feeling really POTSy?

Clare: Just laying down in bed on the couch and watching something, tv, baseball. Yeah.

Jill Brook: Do you have anything that helps you fall asleep? I.

Clare: Yeah, sort, sort of, it's kind of a weird technique. Not only do I count in my head 'cause that's not a distraction for me, but I took a sign language class and I sign the numbers as I count, and that helps me concentrate enough until my mind is distracted enough for me to go to sleep.

Jill Brook: Oh, cool. I like that. Do you have any little tips or tricks that give you energy when you need it?

Clare: Yeah, that's the one question I can't answer, but if you or anyone actually has energy boosting tips, I would love to hear [00:36:00] them.

Jill Brook: What is a gift that you would give to every POTS patient on earth if you had infinite funds?

Clare: Free electrolytes and cooling equipment.

Jill Brook: what is something you are grateful for?

Clare: I'm just grateful to be here at the law school I wanted to go to with very minimal, well, Boston's expensive, but I got a tuition scholarship, so I'm really thankful that I can just be here and do that.

Jill Brook: Excellent. And last question, is there anything you wanna say, either message or advice or anything to your fellow POTS patients out there who are listening?

Clare: Well first of all, it's not all in your head, right? You know, the wait times have gotten longer and I know that sucks, but just hang in there. Take it day by day and it will get better. I don't know how long it'll take to get better, but it will get better.

Jill Brook: [00:37:00] Awesome. Well, Clare, it's been so nice speaking with you. Thank you for sharing your story and your insights. We're so grateful and I know everybody listening is just sending you all the best wishes going forward. Good luck in law school. We can't wait till you're out there, uh, making a difference in the world, uh, legally.

Clare: Yeah. Thank you so much.

Jill Brook: All right, listeners. That's all for today. We'll be back again next week, but until then, thank you for listening, remember, you're not alone, and please join us again soon.