Transcript:

Laura:

What is your name?

Amy:

My name is Amy Sundin Unger.

Laura:

Beautiful. And how old are you?

Amy:

I am 36 years old.

Laura:

Woohoo, I’m 37.

And what are your preferred pronouns?

Amy:

She/ they.

Laura:

And would you mind sharing about your disability?

Amy:

Sure. So, I was diagnosed with hypermobile Ehlers Danlos Syndrome, and I also have POTS.

Laura:

I kind of suspected, well, I have a connective tissue disorder. And so I find, I don't have Ehlers Danlos, but I do a lot of research about Ehlers Danlos and I know POTS is a comorbidity of Ehlers Danlos. So based on the symptoms that you said-

Amy:

It’s so much fun!

Laura:

Haha, yeah…

Amy:

I’m like still waiting for that medication to kick in right now.

Laura:

Is there a medication for it? I didn't know that.

Amy:

Yes. Yeah, I am on, I actually saw Dr. Grubb, down in Toledo. He's one of the people who actually runs a dysautonomia clinic. So, it took me forever to figure out, oh, this is where I should go. And yeah, they actually do have some treatments that people can use, and the one that I'm on right now is Corlanor. And that medication like changed my life. My fatigue was gone in two days. Two days! I couldn’t believe it. So, I'm hoping it continues to work.

Laura:

Yeah, I’ll put the good vibes out there for you.

Amy:

Currently waiting for it to kick in a little bit more.

Laura:

Well, thanks for meeting me this early in the day.

Amy:

Totally, cool.

Laura:

Alright, so you have EDS, POTS. When were you diagnosed with Ehlers Danlos?

Amy:

So, I was a late diagnosis. Yeah, I actually only got diagnosed about two years ago. Actually, it might have been only one year. I've been like, down this road for a while. But it's incredibly hard to get diagnosed, because there are so few providers who understand it, which makes it difficult. And thankfully, I have a primary care physician who was willing to coordinate with me and really just you know, go through a couple of different specialists and then eventually Beaumont genetics. It was Beaumont adult genetics clinic, specifically. They're not the same as the geneticist. The geneticists currently in the state seem to not be seeing hEDS [hypermobile Ehlers Danlos Syndrome] people. Yes, they will only see you if they suspect that you have a more severe form, such as vascular or one of the classical ones, because there's no known genetic marker.

Laura:

Okay, for hEDS.

Amy:

Yes, yeah. So, basically when I got my connective tissue panel done, when it came back, it was just like, oh, there might be some weird things here and there, but there was no known mutation. Yeah, so until they identify those giant genetic markers-

Laura:

Yeah, you're kind of stuck. So then how did the Beaumont, how were they like yes, you do have hEDS? How did they identify it?

Amy:

So they took a lot of family history from me, because we did discover which side of my family this came from. Yeah, just through my own research and stuff and talking to family members.

Laura:

Like who's bendy? Who looks really young despite their age?

Amy:

Exactly. Yeah, so they just took a complete history and my symptomology too. I have a lot of signs of it. So, they said the indication was Ehlers Danlos.

Laura:

Was that a huge relief when you finally got a diagnosis?

Amy:

A huge, huge relief, because then I can move on to the next steps.

Laura:

Yeah, like actually treating it.

Amy:

Yes.

Laura:

How did you first identify EDS for you? How were you like, I think this might be what I have?

Amy:

I was having joint pain. Big shocker, right? So, lots of joint pain and I just kept googling things. And also, I knew I was hypermobile. It's very obvious in my body. I'm like a nine on the Beighton. So, my physical therapist even said like, you have some of the bendiest elbows I’ve ever seen. And they specialize in hypermobility, so I’m like, oh, I’m flattered.

Laura:

What physical therapist do you go to?

Amy:

There's a physical therapy place out in Sterling Heights. I believe it is called-

Laura:

Is it called Clegg and Guest?

Amy:

Yes.

Laura:

That's where I go. Do you know Melissa and Stan?

Amy:

Yeah, Melissa.

Laura:

Yeah, Melissa is awesome. She has taught me a lot about my body. I’m really happy to have her. Oh so cool!

Amy:

They were really like a big piece in me getting diagnosed as well because they were able to document things and they kind of pushed for me to go that extra step to get that diagnosis because I was like, I don't know if I'm severe or not. And then they were like, looking at me like yeah, you might wanna…

Laura:

Yeah, Melissa’s funny. She kind of just gets right to the point. She doesn't sugarcoat stuff, which I enjoy.

Amy:

It's fantastic.

Laura:

Yeah, she gets right to it. Okay, well, that's awesome. glad that you found that. Yeah, I found them because like, we're from Chicago. And we just moved here like two years ago. And so I think I Googled like, hypermobility, Detroit, and that's what came up, like her Linkedin profile.

Amy:

Yes, that's how I found her was like her LinkedIn profile. It’s such a bizarre way to get there. Yeah, that's funny.

Laura:

That SEO on LinkedIn must be really good or something.

Amy:

Yeah, she set that profile up perfectly.

Laura:

Thank you, Melissa. Maybe we'll run into each other there. I'm on a break from PT right now, but I'm sure I'll be back.

Amy:

Yeah, you always need to tune-up for something.

Laura:

Tune-up is a really good way to put it. But yes, I will need a tune-up. Okay, so the POTS, how did that come about and when did you start to suspect that you have POTS as well?

Amy:

So that one, I started to suspect it when I was like getting kind of short of breath and winded and you know, these nice little smartwatches now, give you more information. So, I was noticing like, I'd be lying down and I'd stand up and I'd get dizzy and things like that. So, mine's a little more subtle, but yeah, there are moments where my heart rate just gets going. And I've had exercise intolerance since I was a kid. I could never run a mile, like I was always very athletic, but only to a point. Yeah, so there were all these subtle signs. I have like light sensitivity, nausea, just GI issues like the whole role.

Laura:

Okay, I was gonna ask if you had the GI issues.

Amy:

The whole dysautonomia checklist, I definitely had. And then I failed my tilt-table. But not like POTS failed it, like vasovagal failed it.

Laura:

Oh, okay, so then when you vasovagal failed it, I worked in a cardiology office for a little bit of time and they did tilt tables, so tell me what does it mean when you fail it in a vasovagal way?

Amy:

So, your blood pressure just tanks and you pass out. Yes, it was kind of comical because I was the first person who passed out on these four ladies at the tilt table. I knew it was gonna happen, because my IV kind of went wrong. And I was like, oh, shit, this is gonna be it. And then, sure enough they had me standing there and I was like, this is not POTS right now, like see you on the other side and I was gone.

Laura:

Were you in a hospital?

Amy:

Yeah, it was in a hospital setting. Yeah.

Laura:

So you were like, well, someone's gonna come and get me.

Amy:

Yes, I wasn't worried about it. They had the IV with all the saline and soft and just like I came to real quick after they put me back down.

Laura:

That's interesting. I know salt and hydration is really big for POTS, right?

Amy:

Yes.

Laura:

Okay, yeah, I noticed the water bottle. (Laura gestures to Amy’s water bottle.)

Amy:

Yeah, giant water bottle. But I guess that's common for you know, you don't necessarily have to pass out from POTS, but a lot of times, I guess my understanding is it's frequently seen that like, you'll have vasovagal syncope and POTS. They don't exclude one another. Yeah,

Laura:

Gotcha. Interesting. Syncope. That's a term I remember from the cardiology office, that they used a lot.

Amy:

Yeah, so they diagnosed me through a poor man's POTS test. Where like, I got to the dysautonomia clinic and they took my seated heart rate and then I stood up and it immediately went to like 130 and they were like, yeah, you got it, congrats.

Laura:

So do you like this doctor in Toledo? He put you on this medication, so obviously…

Amy:

I see his physician's assistant, Beverly, and yes, it was a fantastic appointment. Like, yeah, everybody there has been super nice. They coordinate care out of state very frequently.

Laura:

Wow. So they know that yeah, they're rare. They are doing something rare.

Amy:

Yes, exactly. It's an underserved community. They want to make sure people can get the care that they need, even if you are out of state. So, if I need lab work, they'll just mail it to me and I can go to a hospital up here to get it done, things like that.

Laura:

So the medication that they put you on, has that been difficult to access at all?

Amy:

For me? I got lucky. It was not difficult. My insurance company, they somehow miraculously were just like, yeah, this is fine. And it's like, it's like $40, on my insurance plan, and then the company actually has like a copay card, so, it gets down to 20. A lot of patients have experienced, like their insurance company, not approving it. So it's still like under a brand name. So it can be incredibly expensive and difficult to access for some people, which is really sad. Yeah and it's an off-label use.

Laura;

Dang. So wow, then it is really surprising your insurance approved it for you.

Amy:

Yes. I was completely shocked. But yeah, they have a way where like their pharmacy at University of Toledo deals with this so often, they'll work on a prior authorization for you, and then they'll send it up to your local pharmacy.

Laura:

This clinic is awesome. What is that doctor's name? I'm gonna tell people

Amy:

It's Dr. Blair P. Grubb. And there's actually like he's done research papers on POTS like he actually is a published researcher with some other people. So yeah.

Laura:

Well, the next person I see who's got EDS and is like this POTS is killing me, I will…

Amy:

Send them there. His physician's assistant has lots of wait time. He has like a two or three year waitlist for him specifically, but his PA I got in within, I think three to four months.

Laura:

Were you able to see the PA first, before him?

Amy:

I just see her exclusively.

Laura:

Yeah, I know sometimes it's like, you got to see the doctor first, and then you can start seeing other people in the clinic.

Amy:

Yeah, in this case, she has enough licensing to where she can actually like see patients and you're still under Dr. Grubb’s care, but it's like you know, he's just looking at the file instead of seeing you.

Laura:

Yeah, he just signs off and is like yes, I agree with that. Well, I'm really happy that has worked out for you. I know it’s always a challenge.

Amy:

Yeah, it’s a nice thing not experiencing like, the fatigue and daily nausea and stuff.

Laura:

Yes, and then the fatigue too, just from having a connective tissue disorder and like being so bendy like that-

Amy:

It's tiring.

Laura:

Yeah. I can't imagine having POTS on top of that.

Amy:

I didn't realize how bad it had gotten until I took that second dose of the ivabradine, or the Corlanor and I was just like, something is vastly different in my body right now. Like, because fatigue lives in like your soul, and through like every molecule of you. Being tired just feels like it's in your eyes, it's such a different feeling. And that's gone and I just get normal-tired now. I can deal with normal tired.

Laura:

Did you just like clean your whole house after?

Amy:

I was like, I have to remember to pace myself. Yeah, I've been doing more basically. Like I can do the dishes and I can like come home from work, and I can go to the grocery store and still cook a meal and like whoa!

Laura:

Even that, I’m like…

Amy:

Yeah, like a small market.

Laura:

Yeah. Oh yeah, I’m an Aldi fan, small market.

Amy:

Yeah, I like my small grocery stores. If it would have been Meijer it would have not been dinnertime after

Laura:

I know, I can’t with Meijer, it’s just too big. Yeah, totally agree with you. All right. Well, next question is what do you like to do for fun?

Amy:

So I actually still continued to do athletics. I do archery. So, I do it seated now because it was getting to be too much on my lower extremities, like just standing in that position. So I do seated archery.

Laura:

Where do you do that?

Amy:

Rising Phoenix. They're out in Troy. So it's a lot of fun. I shoot olympic recurve style.

Laura:

Okay, what does that mean?

Amy:

I have like one of those big bows. It has all like the stuff and the equipment looks really cool. And then I also do curling at the Detroit Curling Club.

Laura:

I didn't know Detroit at a curling club. Cool. Are you able to do that seated? How does that work?

Amy:

It's funny because of the nature of EDs or at least how my body is with EDS. I can look like I'm able bodied when I'm curling. But afterwards, like I have to take extra steps. I had to wear knee braces. Yeah, you know, I have my KT Tape.

Laura:

I’m wearing both of those things right now.

Amy:

Yeah, exactly. Yeah, and then I use my cane when I'm walking around in the club, because like when I'm on the ice, my cane is literally my broom. That's my third point of contact. So, I have better balance. more stability.

Laura:

And then do you have to like, sit after ya- I mean, curling, you push it, right?

Amy:

I also like do a lot of the sweeping and stuff and yeah, it's very athletic,

Laura:

Oh, I forgot sweeping was part of it.

Amy:

Yeah, it's just because like, my joints are moving, I can change the way that I'm standing very easily, like, you know, I don't have to load my joints in a certain way every single time.

Laura:

Okay, yeah, so being able to move is helpful for you?

Amy:

I still have to pregame with Advil and stuff, and I have to really watch what I'm doing. I've had to modify a little bit of my delivery, because of my hip. That type of stuff. I know Melissa and Stan are happy that I'm active.

Laura:

And I'm sure they helped you how to like figure out how to curl and do things that are best for you.

Amy:

Yeah.

Laura:

I love them. They're like better PTS than I got in Chicago, I have to say. You would think Chicago is so big that they've got that stuff like handled but yeah, really, hypermobility was a challenge there. But yeah, happy that we both like Stan & Melissa. Alright, so you do archery, curling, anything else?

Amy:

Yes, I make quilts.

Laura:

Oh, cool! Okay, how was that with your hands and stuff? Because I know that can be harder for EDS, like, just the joints fatigue?

Amy:

And I do notice that I have to kind of vary my tasks. When I'm doing it. I have to take breaks in between things, wear my ring splints, you know, that type of stuff. So just the usual strategies and like, be aware of when somethings flaring up and like, either modify it or stop. I have like an ergonomic rotary cutter.

Laura:

Oh, I didn’t know they had those.

Amy:

Yeah, it's very nice.

Laura:

Do you have a picture of one of your quilts? I'd love to see them if you don't mind.

Amy:

I do have a few up on Instagram and stuff. Let me see if I can find some of the recent ones I did… (scrolling through photos on phone)... I have so many cat pictures. It's like an offensive amount of cat pictures. (Amy shows pictures to Laura and Brian)

Laura:

Oh wow, I love that! Awesome. Very well done.

Amy:

Thank you. That was actually like, I did it, it was like randomly generated. So, I did it where I rolled dice to determine what color I picked and everything and which orientation of the block.

Laura:

Oh, cool!

Amy:

Yeah, so that one was a lot of fun.

Laura:

Wow, well it turned out really well.

Amy:

Thank you. Have like pictures of me like, ‘how did I tape my knee that day?’

Laura:

Oh, yeah, I got those.

Amy:

Yeah, so many tape pictures.

Laura:

Melissa is really, she introduced me to KT tape and then…

Amy:

The leukotape?

Laura:

You know, I have a latex allergy, so I can't do the leukotape, unfortunately. But your skin is fine with the leukotape?

Amy:

It is not fine.

Laura:

Oh, okay.

Amy:

Not fine with any tape really, but I can wear it for limited periods of time. And then I have to take it off, otherwise, yes, I become itchy and red and angry. I can't find the other quilt I was going to show you but I guess I'll just have to send it to you.

Laura:

Yeah, please do.

Amy:

I definitely did a zebra themed quilt.

Laura:

Cool. (speaking to Brian) I don’t know if you know, but EDS, zebras that's their... I don't where does that come from? Do you know?

Amy:

Yes, so in medicine, they say, what is iit? It's like when you hear hoofbeats think horses, not zebras. So think about the more common thing it could be than the more rare thing. And yes, so in the case of EDS, and especially hEDS, we're starting to realize that it's a little more common than we thought, it's just under-diagnosed because of that kind of thinking. Yeah, that we see about us.

Laura:

Absolutely. Yeah, that kind of thinking just angers my heart. Right. So quilting, archery, curling, all very cool hobbies. What do you do for work, if you don't mind me asking?

Amy:

So I'm a producer and project manager. I work primarily in advertising and animation. And then I'm also working on a project right now where we are setting up an animation and motion design education program that we're hoping to run in different studios and provide education to people, hopefully for free, that's the idea, so that people don't have to go someplace really expensive.

Laura:

Yes, the entry point there can be challenging.

Amy:

Yes. We want to break down those barriers. Yeah, you know, especially the financial barriers so we can get more diversity into the industry.

Laura:

Yeah, something every industry is *hopefully* trying to do right now. Alright, the next question is what motivates or inspires you?

Amy:

Mmmm, that’s one of those tough ones.

Laura:

Yeah, making you dig down a little deeper, if that's okay.

Amy:

Like, I don't know I'm not I'm not one of those like, when people ask me those big grand questions, like a five year plan and stuff like that. Yeah, I roll out of bed, like I hope things are… I guess like, lately, what's been inspiring me is just like I've been engaging more in disabled communities, which is great, like talking to more people who have disabilities of varying kinds, mostly through the internet. And it's like, just having that kind of community like helps you keep going, because you're not on an island by yourself and like just having other people around you that like, get it. Like, “Sorry, I can't come out today” or whatever, because it's like “I'm exhausted”, or something like that. Like people who understand because they have flare ups too.

Laura:

It's such a relief to meet other people who know those things. Especially because, let me ask, like in your family, are you the only one with EDS or do you have the most severe like version of it? How does that shake out?

Amy:

Right, so I'm currently the only one diagnosed with it, but my mom did have a lot of the signs and symptoms, she just didn’t know. And my hypermobility is one of the most severe. I'm saying ‘one of’ because I found another person in the photo album, and there's a couple other relatives that have had these weird health issues and none of the doctors know what's going on et cetera. So I pursued it.

Laura:

Gotcha. Like, no one else in my family has Larsen's Syndrome, that's what I have, and it is, it's just challenging, like, literally no one in your life like, understands what you're going through. That's why it's so helpful to just meet other people and then you like, stop gaslighting yourself that way.

Amy:

It's funny because like, the more I talk to my mom about my symptoms, the more she's like, “oh, yeah, I've had that my whole life”, I’m like, “yeah, m-kay.”

Laura:

Yeah, “maybe you should see this doctor” or is she kind of at the point where she's like, “meh”?

Amy:

Exactly. And she's actually not in the same state. So, there is another doctor out there who does specialize in EDS, so if she wanted to, she could go and see that person, but she has some knowledgeable medical people that get it.

Laura:

That's nice.

Amy:

But it was really wild. Like doing the Beighton with her. I'm like yeah, you totally have it.

Laura:

Yeah. Do you have the stretchy skin? I don't have that.

Amy:

I’m a little bit stretchy. And then like my neck skin is a little bit stretchy.

Laura:

Yeah, I feel like I see it more in the neck.

I don't have the stretchy skin. I wish I did have all that collagen.

Amy:

I’m like the soft velvety person too.

Laura:

Nice, No free touches people.

Alright, so how did you like, in what way on the internet are you talking with other people? Is it like Reddit or Instagram or Facebook or all of them?

Amy:

Mostly Instagram. And then there is actually it's funny because there's a lingerie company that started up, Liberare, and they are doing adaptive bras. And they really focus on the disabled community. And they actually started their own sort of little social network thing on this platform that anybody can join, if you have a disability, even if it's just self identified. And it's like a neat little like, app, where you can like talk to people.

Laura:

Okay, I'm gonna have to look into that.

Amy:

Yeah, nice bras and stuff. Especially if you have trouble with shoulder mobility, they have like a front closure with magnets. It's really nice, like people with limb differences can easily use it and stuff.

Laura:

Didn't Skims try to do, I think they're trying to do adaptive clothing? Maybe, I don’t know.

Amy:

And the nice thing is they're getting input from that community that they’ve built. Like they ask people for feedback, and they actually just re-released a bra based on everybody's feedback.

Laura:

Oh, cool. Okay, so that sounds legit. If you're like creating your own community out of this, that’s pretty cool.

Amy:

Yep. They hire disabled people. They scout their models through that community. So they're getting like people with disabilities and a variety of them.

Laura:

Awesome. I’m definitely going to look at that. All right, final question. And that's another heavy hitter. What change would you like to see for disabled people in the future?

Amy:

I mean, there's just so many issues with access, like that's the biggest thing. It's like the logistics of going someplace: Is there going to be a bathroom that's available to me? Are there stairs? Is the elevator functioning? Is there a ramp to get into the building? You know, even one of the buildings I'm currently working in, we kind of joke about this because there is a accessible toilet, like bathroom, at the top of three flights of stairs. Also just like the fact that I think people don't realize how varied disability is, you know, dynamic disabilities exist. It can change from day to day. And anybody can become disabled anytime and I think we'd like to, like block that out. And it's like, no, you you can- at any time.

Laura:

Literally, you could wake up tomorrow…

Amy:

So like, you know, understanding that accessibility benefits, everybody. You know, if you live long enough, the chances are you are going to be disabled at some point.

Laura:

Yeah, you're gonna be really happy that this stuff is there for you.

Amy:

Very few able bodied 90 year olds out there.

Laura:

I can’t think of a single one. Yeah, access is huge. Yeah, absolutely. All right. Well, excellent. I think that we nailed it. Anything else you want the world to know?

Amy:

Laura:

Ok, well we covered a lot. Awesome. Great job. Thank you.