Ehler Danlos Syndrome with Mik Lenth

Chantal Boyle:
Hello. My name is Chantal. And joining me today is my colleague, Lynn, who is based in the US, and runs the Hidden Disabilities Sunflower in the US. How are you doing, Lynn?

Lynn Smith:
I'm doing well, thank you.

Chantal Boyle:
Good. And also joining us is Mik, he was also based in the US, in the Midwest. How are you doing Mik?

Mik Lenth:
I'm doing well, thank you.

Chantal Boyle:
Can you tell me a bit about yourself, please?

Mik Lenth:
Yeah. I am 19 years old. I currently live in Iowa, but I go to school in St. Louis University, so I'm actually going to be moving there in the spring, when I got back from studying abroad, really excited.

Chantal Boyle:
Where are you going abroad?

Mik Lenth:
I'm going to Madrid.

Chantal Boyle:
That's [inaudible 00:00:44]. When are you heading there?

Mik Lenth:
I leave at the very end of August and then I come back three days before Christmas.

Chantal Boyle:
Oh, that'd be so nice. So nice. So, what are you going to be doing in Madrid?

Mik Lenth:
I'm going there for school. So, my school has a campus in Madrid, which is really nice, so I don't have to transfer any paperwork or anything. And then, I'll just be studying and hopefully traveling a lot too.

Chantal Boyle:
So, what you're... What you're studying is related to Madrid, presumably, or for Spain?

Mik Lenth:
Yep, I'm International and Spanish major, so I'll learn a lot there.

Chantal Boyle:
And have you been to Europe before?

Mik Lenth:
I've actually been to Madrid before, a couple of years ago for a class trip, and then we've had foreign exchange students in the past. So, we visited Germany once, which was really cool, but I don't really remember that one as much, just because I was so little.

Chantal Boyle:
Yeah. Yeah. It's very, very different in Germany. I haven't been to Madrid yet, hopefully, once COVID is over, I can get on and have a plane and go somewhere, be nice. And you said you're 19, so what are your interests?

Mik Lenth:
I've played violin since the fourth grade, so I definitely love music. I really like art, and pretty much any sense, I guess.

Chantal Boyle:
You're creative.

Mik Lenth:
I wish I was more creative. I mostly watch and listen though, honestly. Yeah. Other than that, I just... There's not a lot to do in Iowa, so I haven't found as many of my interests yet.

Chantal Boyle:
Yet. Well, you've got your whole life ahead of you and I'm sure that they will come... They will be coming in thick and fast, as you start your journey into, I guess, adulthood, isn't it, 19? Can I ask you what your health conditions are and how long you've had them?

Mik Lenth:
Yeah. I have Ehlers-Danlos syndrome, EDS, I'm hypermobility type. So, I got diagnosed this March, so... When I was 19, but it's a genetic condition, so I've had it my whole life. It's just a connective tissue disorder, so my joints don't hold in place as well as other peoples, so...

Chantal Boyle:
What happens to you when you have a flare up?

Mik Lenth:
I get a lot of dislocations and subluxations, which are partial dislocations. So, my shoulders are the easiest to talk about because they... I can pop them in and out, I'm not going to, because you're not supposed to show those.

Chantal Boyle:
Does it hurt when you do that?

Mik Lenth:
Honestly, no. For most people, it does, when their joints come out of place, but for my shoulders, especially, they don't hurt, which is very surprising to me. My other joints, they do hurt, if I ever sublux them. That my shoulders are the only ones that I can dislocate, but the other joints, they sublux quite a bit, thankfully, not as much though.

Chantal Boyle:
Do you take any medications for that?

Mik Lenth:
No. I have one prescription for pain medicine that I very rarely take, only in extreme cases. My jaw surgeon wants to me to get onto some muscle relaxers, so I'll probably be starting those soon. Other than that, I use a lot of lidocaine cream, arthritis cream for my hands, there are certain patches, mostly over the counter stuff, KT tape, that's about it.

Chantal Boyle:
Have you had any operations from this? And can you tell me a little bit about them?

Mik Lenth:
Yeah, so I've had... I have really bad TMJ, which means... Well, for me, my disc is out of place. So, I had two arthrocentesis, so they take a syringe and they inject saline into the joint to try to give the disc some space to move around and go back into place. I had two of those in 2019 and they actually made my jaw quite a bit worse. The only good thing is that it doesn't lock up as much anymore. Other than that, the pain got a lot worse. And then, I've also got this beautiful, not really pretty, scar here from...

Chantal Boyle:
Mik is showing us her scar which is on her knee. It's running the over the knee cap, isn't it?

Mik Lenth:
Yeah.

Chantal Boyle:
[crosstalk 00:05:06] Long and deep?

Mik Lenth:
Probably, about five or six inches. That's from a knee surgery I had this year, in January. So, they went in, laparoscopically. You can't see those marks as much, but there's some really small little marks here. They went in laparoscopically, at first, to clean out the joint, because there was some broken cartilage, but there was more [inaudible 00:05:32] than they expected, so they had to cut into my leg, and they took a piece of my shinbone, and cut it and shifted it up, so that the tendon wasn't pressing on the patella as much, causing more damage. But other than that, I have one operation coming up in December for my jaw again, they're going to do an arthroscopic approach, which is like my knee, at first, the large incision, but they're going to take a scope into the joint and then flush it again. But then, they're also going to inject plasma, because I have a lot of scar tissue, and plasma has a lot of healing properties, so this one is supposed to be more promising.

Chantal Boyle:
Not as invasive as the knee, but?...

Mik Lenth:
Definitely not. I don't even think there'll be a scar.

Chantal Boyle:
And how long do they?... Will you be in hospital for that procedure?

Mik Lenth:
It is an outpatient procedure, but it take... The recovery is pretty long. Usually, you can go on soft foods for about, I think, you said a month, but since my jaw's a bit more severed, they're going to have me on a liquid diet, which, if you know me, I get really hangry, so I'm going to be [inaudible 00:06:43].

Chantal Boyle:
Your poor family, they're going to be looking after you, being all hangry.

Mik Lenth:
I know, they should probably run while they can.

Chantal Boyle:
So, you've had these operations and it's mostly connected to your jaw and your knee. You said that your shoulders are hypermobile, but is any other parts of your body, is that?... Are they affected? And I'm sorry, I didn't ask, when did it start? Did you say when you were a baby, or?...

Mik Lenth:
So, the EDS, I've had my whole life, my jaw issues started when I was about 12, but they didn't start getting bad until about high school age, and they just progressed from there. And then, my knee started getting bad, two years ago. Wait, what year is this? Started getting bad, three years ago. But I think, my knees, since I was limping quite a bit, messed with my hips, so those are starting to bother me. But, other than that, just my hands hurt. I think, when I went to college, beforehand, I never really took notes, so then, I started taking written notes, and I remember my very last final, I was taking notes for 12 hours straight, and then I went home, and my hand was throbbing. So, I put it in a brace and stuff, didn't really know what to do, didn't know was happening.

Lynn Smith:
So, I mean, it must've had an impact on your education, especially, note taking, and things, with your hands.

Mik Lenth:
So, I missed a lot of class. I went home sick, a lot, just because it hurt too much. And then, my freshman year of college, I didn't miss as much class, because I got pretty good at maintaining the... My pain levels. But there were days where I definitely couldn't go to class or I couldn't focus as well, because, if something hurts, your brain really tries to think about it. There's also brain fog and fatigue that come along. So, sometimes just sitting in class, the teacher's talking, but it's really hard to... You hear it, but it doesn't stick with you as much.

Chantal Boyle:
What's a typical day like for you in regards to your health and what challenges do you face?

Mik Lenth:
Honestly, the pain isn't even the hardest part about my condition. I feel the brain fog is harder to work with, just because you have people talking to you, you have things that you need to do and go out, driving is scary when you can't focus very well.

Chantal Boyle:
You said that you can feel if a flare up is coming, so you get some warning triggers, do you?

Mik Lenth:
There is times where I will work a double, and I know that the next day I'm going to hurt a lot from it. So, I've had to prepare for that as much as I can.

Lynn Smith:
Are there any activities that you can't participate in due to your health conditions?

Mik Lenth:
I used to weight lift a lot, actually. And I was never able to do leg... Leg day, because I started getting into it when my knee started going bad, but I would bench and stuff, and do what I could with my legs, I was really good at adapting. But after my knee surgery, I was just out for too long. It's really hard to get back in when you need that constant stability exercises.

Lynn Smith:
You said that your health does have an impact on things like school. What are your relationships like with your teachers? You said one of them understood, and one of them not so much, how does this impact your social life?

Mik Lenth:
I've only really talked to three of my teachers about it. It was the two Physical Ed teachers and then my Spanish teacher. This was the class I missed the most, my senior year, because it was at the very end of the day and it had a lot of talking, and sometimes I just... I wasn't able to speak sometimes. But my physical education teachers, one of them, helped me find different activities I can do to work on my legs. And then the other one docked me points when I missed school for my surgery, even though, I went to the gym to make it up. So, it just depends on the person. Most people are very understanding. My social relationships, it hasn't affected a ton. You can tell when someone's a little bit uncomfortable when you're talking about some of the things you go through because it's not normal to everyone, it can sound really brutal.

Mik Lenth:
I found this one friend since kindergarten, and she also has some chronic illnesses, and she and I chat all the time about how it makes us feel, and some of the things that we go through, and about relationships as well. So, she has been very important to my life. I'm dating this guy and he's been amazing. And it's... It's really funny, because when we first started dating, it was before my jaw and my knee were really, really bad. And when I first met him, I had just rammed my good knee into a desk, so I was limping around, I was like, "I promise I'm not always like this." Three years later, I'm like, "Oh, so about that? Sorry." He's been so good. He accommodates when needed, if plans need to change, we change them, he catches me whenever I pass out, he'll massage my joints, if I need to, he's been amazing with it. And it can be really hard to love someone with a chronic illness, but he makes it look easy, so I'm very thankful for him and my best friend.

Chantal Boyle:
That's really nice. I think having this support... Support network around you is absolutely crucial, isn't it? You've mentioned that you sometimes pass out, is that something else that you have to navigate as well?

Mik Lenth:
Yeah. I don't know if that's part of EDS. I don't know if it's part of a different condition. I just get really dizzy sometimes, I think my blood pressure drops quite a bit. It happens a lot right when I stand up, but it also happens sometimes after I've been standing, but... Yeah, something I deal with.

Chantal Boyle:
How did you find out about the Sunflower?

Mik Lenth:
So, I am on a couple of community pages on this app called Discord, but I'm also on an Ehlers-Danlos page and they have a... Some page for Reddit posts, that's another social media forum. And someone posted about the Sunflower and about what it represents. And I thought it was really cool, so I got it, and I was not expecting it to lead to any of this, but I'm happy it did. Yeah. I call it a community page. It's navigate... Or it's directed more towards gamers, but there's a lot of pages that aren't about gaming at all.

Lynn Smith:
So, do you wear any of the Sunflower products now? Have you tried it out? And if so, which ones?

Mik Lenth:
Yeah, I have. I really love pins, which is also what drew me to it. I was like, "Yes, a pin." So, I have the pin, I keep it on my backpack.

Mik Lenth:
And then I also have the lanyard that I have attached my wallet, so I'm pretty much always have one or the other with me.

Lynn Smith:
Has it been recognized? And what situations do you tend to wear it in? Do you just always have it when you're out?

Mik Lenth:
I've had questions like, "Oh, that's a cute sunflower, what's that for?" And I explain, and I think that's really cool, but I wear it whenever I go out. I know some people wear it when they feel like they need a little bit more help that day. I usually wear it because I like senses of immunity. So, I'm always looking out for someone else who has it. And I think it'd be really cool to run into someone on the street and be like, "Hey, what's your story? Here's mine. Want to be friends?"

Chantal Boyle:
Like finding your own tribe or finding people who have empathy to your experiences, your everyday experiences. It's not just being unwell, or having pain, or disruption for a couple of days, it's a every day... Everyday life for you. It's your normal. And having that connection with other people who understand must be incredibly important.

Mik Lenth:
Yeah. I really like what you said there about how it's not just about the pain. A lot of people hear about chronic illnesses and all they think about is the pain and suffering, but they don't think about all the things that we've gained through it. You'd have gained empathy, we've gained experiences and education. And I think that is really important as well.

Chantal Boyle:
Would you recommend the Sunflower? Do you see the Sunflower really growing in the Midwest, for example, in Iowa, where you are, because we have?... We, obviously, have a presence in the US, it's gaining momentum. Do you think there's a need for it in American society?

Mik Lenth:
I really do think that more people should have it. I've recommended it to a lot of my friends that have chronic illnesses and disabilities, but I think it's a really good way just to show part of who we are too, and able to find other people. And it's a good symbol. I love sunflowers. And I just... I like that that's what it represents too.

Chantal Boyle:
That's great. Will you use the resources up on our website? And there's free posters, there's videos, there's all things on there to... To share, and it's really great way, there's so cost attached to it. So, you should be able to, hopefully, really get some awareness going within your university. That'd be excellent.

Mik Lenth:
Yeah. That'd be really cool. I'm definitely going to talk to the girls I'm starting it with, and see if maybe we can also promote the Sunflower, but I think it'd be a really great opportunity there.

Chantal Boyle:
The statistics are really high of people that have a disability. One in five people have a disability. I think that translates the same in the US, 80% of which are hidden. So, that is a phenomenal amount of people out there that either have a disability or know somebody that has one, so I'm sure that... That your idea to start this group, but when you go to campus, it's going to be excellent, and a lot of people be really grateful for it.

Mik Lenth:
With Hidden Disabilities, if you can't see it, a lot of people don't believe it. So, a lot of people also deal with mental health problems as well, and it's something that needs to be talked about.

Lynn Smith:
What would you like the outcome of our conversation to be today?

Mik Lenth:
With Hidden Disabilities, especially, you can't always see what's happening, so hearing what people go through and hearing that there is more to a chronic illness than the pain and the suffering, is also really important that this is our everyday, but it's not tragic. Disability isn't a bad word, there's a lot to gain with it.

Chantal Boyle:
That's lovely.

Lynn Smith:
Thank you so much for your participation. I... The program's great, people like you are going to help spread the word and our goal is to, one day, have your Sunflower recognized everywhere, when you walk down the street.

Mik Lenth:
I really hope so. I would love to see someone on the street with a Sunflower and be like, "Hey, what's up?" Thank you so much. Thanks for having me. I really hope that we can get more awareness in the US too, it'll be really cool.