Tenacious Tiffany - Living Her Best Life with Progeria

Tiffany always knew she was different but is always full of joy despite her physical challenges.  When she became a teenager, she discovered just how unique she truly was. Through testing, she, her brother, and mother discovered they all had Progeria, a rapid aging disability. At 43, Tiffany is relatively healthy and definitely happy! It was a joy and honor to sit and talk with this "unicorn" who has a 1:50 million life!  Tune in and enjoy this episode of Disability Talks.

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Transcript

Intro: 0:00

Welcome to DisAbility Talks, a podcast produced by Abilities in Motion. I'm your host, Shelly Houser. Join us for real conversations and no nonsense talk from everyday people with disabilities, living their most independent everyday lives. Tune in for the latest news surrounding disability, accessibility, and independence. Where conversations aren't dissed and stories that need to be told aren't missed. So let's talk.

Shelly: 0:28

One of the world's lesser known disabilities is Hutchinson's Guilford syndrome also known as progeria. I first learned about this syndrome in college and found it fascinating what the human body can do. So I reached out to our next guest to take a deeper look at this rare disability and ask her what her one and 18 million life is like. Please, welcome to the show. Tenacious, Tiffany Wedekind and good morning.

Tiffany: 0:51

Hello Shelly. Thanks for having me.

Shelly: 0:53

So you join us from up a few states from Pennsylvania. So I am super excited to have you, because I asked around the office to my coworkers to see who had heard of Progeria. So not a lot of people did. So I think you and I have some work to do for my coworkers and our listeners worldwide. So explain to our listeners what Progeria is.

Tiffany: 1:17

So Progeria is a very rare rapid aging disease, and it affects roughly 350 people in the world. And I happened to be one of them.

Shelly: 1:31

Lucky you.

Tiffany: 1:32

I know!

Shelly: 1:34

You are, you are the unicorn, Tiffany.

Tiffany: 1:36

I, uh, yes I am because I am an anomaly within my anomaly.

Shelly: 1:43

How is that?

Tiffany: 1:44

Well, because I typically the age, um, for the life expectancy for patients with Progeria is roughly 13 years, seven, 13 years of age. Some of them live older, um, due to the, you know, new treatments and things like that. Um, the patients are living longer, but typically the life expectancy is about 13 years of age. And I am 44 this year. Just to take you through the land of Progeria, it's a genetic disorder, it's a mutation. And one of the genes that element a gene, and typically when, uh, patients are born with Progeria, you see that very early in life as early as a year old, sometimes even at birth, my symptoms developed later in life around the time that I hit puberty. So typically when patients are dying of this disease, I was just literally getting started in my life and I was having difficulties, but they did not know what it was. So I am rare because I am one in 50 million and even more so rare. My mom has the disease and my brother had the disease, but he passed away 10 years ago from it. So not only one of us had it, three of us had it even more unheard of my mom has it.

Shelly: 3:19

But you were saying to me, yeah, y ou d id. She doesn't present visually like the typical Progeria patient. N o. Does she have any physical symptoms?

Tiffany: 3:30

Um, you now that when you look at her, you can see now that we know, cause I look a lot like my mom, but her body, she started developing issues very early, but one of the things with Progeria, the things that's noticed is early on hairline was small, a small phase, small, uh, facial features. And she didn't have any of that. When she got around, I would say, I want to say in our late forties, maybe I know, I remember her being in an accident at her back and they thought for the longest time it was her back. It was her back. So they did all these back surgeries to come to find out. It wasn't her back at all! It was h er hips. She had dysplasia a nd she had to get both of her hips replaced, b ut see, that's what it h ad even like for me growing up. And I know it was like that f or my brother. I feel like an experiment sometimes because they don't know all growing up because they had no idea about Progeria. And they thought we were even seen at genetics doctors early on b ecause we were small. But then growing up, like, so my brother broken both of his femur bones, hardest bone in your body to break. They knew then like, whoa, what's that? That's not normal. So, so many things growing up like our teeth. My God, I've had issues with my teeth since I was seven years old, they were pulling my teeth because my baby teeth wouldn't come out. They had no idea why that was happening. But all through my life, I was i n b races for five, six years, which is not normal. Also. Then I g et all my teeth pulled. I now h ave, you know, just recently, l ast two years, they took all the rest of my teeth. I mean, t hat's p retty smile.

Shelly: 5:40

You do, that's great smile.

Tiffany: 5:41

So it has been, they, so they haven't known how to really treat us. I guess.

Shelly: 5:50

Do Progeria patients typically have more brittle bones? Is that part of it or you don't know?

Tiffany: 5:57

Yeah! Issues with their joints, hips, arthritis, dysplasia. I mean, I have those things that are wrong with Me. I mean, you can't, you can't see, but you c an see my hands are just, they h urt.

Shelly: 6:08

The knuckles. The knuckles are proitruding like arthritis.

Tiffany: 6:10

Very little fat body fat. So seeing that as they develop, you know, that's what they see at first. But then as they d eveloped even young seven years old, they're having strokes. They're having issues with heart disease, issues with hearing loss, vision impairment, not being able to walk. So I don't know why we d eveloped the, w hen my brother had a much worse than I did growing up and he passed away. He was 39, but he had his first open heart surgery at 30 that's what really triggered to find out, dive deep into like, okay, he's having all these b rittle bones, he's got shortened stature. They even put my brother on growth hormone, which ended up that growth hormone specifically was causing defects a nd children that they were giving it to. So I don't know if that maybe up'd t o h is risk factor, but you know, they didn't know. They really started to try to figure out well what's going on. And Dr. McBride is actually the one finding the result that, not him. He had to send our blood w ork o ut. I believe they sent it out to the University of Washington. U m, and I did a lot of extensive research and it came back that this i s what we had. U m, but that was after like I didn't get diagnosed until I was in my late twenties, which kids with progeria get diagnosed w ithin their first year of having it. So I had a chance to live my life, try and live my life. Like everybody else has been living, but at the same time, struggling in the process because they don't know how to treat. They did not know how they know more about it now they know more about the u nderlying issues and things that they can treat that way, like cardiovascular disease and at the cardiologist between the c ardiologist and the vascular doctor, I'm there every six months. Someone's looking at me!

Shelly: 8:24

Are you a part of this community of support worldwide?

Tiffany: 8:27

Yes!

Shelly: 8:28

Tell us about that. What do you guys do for each other?

Tiffany: 8:31

So I have just over, I would say these last two years really gotten to know a lot of people in the progeria community because I, myself work closely with, um, the Progeria research foundation, which is head by Leslie Gordon in Massachusetts. And the reason why she started the foundation is she had a son. You can look him up t oo. His name is Sam Burns. He did a Ted talk. I believe he passed away when he was 18, 19. U m, shortly after h e graduated high school, I reached out to them letting them know, like after it came back from the genetics stating, yes, this is what our research has. I reached out to them, letting them know of my family. And at first they were a sort of like, oh, you probably have Warner's syndrome. I'm like, m m, n o, all three of us have Progeria. And they were just like WHAT??!

Shelly: 9:32

They were dumbfounded.

Tiffany: 9:32

They were really excited about that because they had never, that was unheard of for them. So we, my mom and I, and w hile I technically my brother too, because they h ave him, they can regenerate his cells over and over and over and over again at children's hospital. I know if you look at m y, if you watch my documentary, I did not know that. And then I discovered that and I was like, my brother he's in here?

Shelly: 10:02

He's still there. But part of him,(laughter)

Tiffany: 10:06

Right? Like his cells, but they can use those cells to do further research, just mind-blowing to me. So we reached out to them. They, you know, quickly got on the phone with us. And next thing you know, it, we are, I raised money for them through my business often on a regular basis. But my mom and I, we donated our DNA for them to research. I believe right at the time that we did that they were starting to research the p rogesterone levels. Which Progeria comes from, I don't know if it comes from the name, but we all h ave progeren and i n our blood, it gets filtered out because we all age. Right? So the progeren filters out typically at a, I would say faster pace, which causes us to, you normal people to age at a slower pace. Ri ght? So the progeren an d o ur blood gets gooped up in the cells and doesn't get released like it's supposed to. Which causes the rapid aging. So if you think about it and the research that they're doing right now, if they find a cure for what we have, which is Progeria, I just th ink H utinson-Guilford syndrome, th ey're o n the path to finding the cure for what do you think?

Shelly: 11:36

Aging? Oh, aging in general, you are going to be the fountain of youth!

Tiffany: 11:43

I feel like the fountain of youth.

Shelly: 11:43

You act like the fountain of youth. So do you think that they're studying you and your mom and your brother, because the three of you, A, the three of you have it together as a family and B, which is an anomaly, but then B also you guys have all lived longer than the normal expected.

Tiffany: 12:03

Yes.

Shelly: 12:04

Life cycle. So if anything else, they could prolong the life expectancy.

Tiffany: 12:11

Correct, Yes. It, which is what they're doing now. They have new, um, they have a drug that now it was recently approved by the FDA. It's called Lornafarnib. I believe the drug name now Zelinski, but as Lornafarnib and I was on it for a short time. I tried, but in the side effects for me were just, I had to, I had to really weigh out, what do I want it to be? Do I want to now have the idea that I'm going to live a little longer? But I'm going to feel like crap the whole time? Or am I just going to take my chances? I'm 44 years old. I've made it this far,so far. I'm in good health for the most part. I mean, I do have issues, but when I look at the kind of issues that the typical patient has, I have to be very thankful that I can get up every day and do whatever I want, because that's how I've made my life. It wasn't always like that.

Shelly: 13:13

Yeah. But one thing you're seriously into is yoga.

Tiffany: 13:16

Yeah.

Shelly: 13:16

And you post a lot of yoga. H ow, how does that work for you h olistically?

Tiffany: 13:22

Oh, I've been doing yoga for a very long time. Actually the woman that instructs, uh, one of my instructors here in my studio has been my instructor personally for the last 16 years. And I've always been a healthy girl and that just got, you know, as I got older, I don't eat fast food and it sorta has stuck with me. Um, but yoga keeps me strong. My body strong. It keeps me flexible. Um, and both physically and mentally, because I am someone, you know, again, I growing up, I suffered, um, with things like I was a hyper child. Yoga to me really helps me. And well, not just the cardiovascular wise, it, we do so many exercises, um, in yoga, different kinds of moves and positions. And we focus on our breathing. That is so important. People don't understand a lot of, you know, I hear people are like, oh yeah, this bad, no yoga is a way of life. Whether you want to do it or not, sometimes you gotta find something that works for you and stick with it. Like my cardiologist told me, Tiffany, whatever you're doing, you keep doing it because you are consistent. So yoga to me helps me stay consistent. It, I mean, breathing is important. That helps me, circulation just, it keeps my body mobile. I mean, with all the arthritis and things that I have, I mean, I'm not sitting here putting my leg behind my head, but I'm doing things that I can do. I, you know, I have my limits, but it keeps me, it keeps me very healthy and strong, physically and mentally. Because I need to calm down. You don't even know me, but I'm sure you're, you can feel like energy. Do your little life fell in there.

Shelly: 15:27

Well, I even feel your energy following you on social media, because you're always going out with your friends and you're always out dancing and you're always trying new, fabulous, eclectic clothes.

Tiffany: 15:39

Yeah. Well, I'm not always out dancing though. I think my dancing out days are over, but I am dancing. Well, now you get older. I look, I don't belong in a club these days.

Shelly: 15:57

I think you and I are both a little older for the clubs, but,

Tiffany: 16:01

Um, like I want to be in bed when it's dark. But I do, I love fashion. I actually just started my own fashion line to Lululmoon and I do upcycling and different things, but I've always been a fashion kind of girl. And I liked dressing people up like that too. It's very boho. It goes with my, my spirit because that's how I started. I live my life every day is an adventure for me. It really truly is. I mean, I have my good days and my bad days, like trust. I mean, you see me that I'm bubbly all the time, but I have bad days. I definitely have bad days, but I don't let people see that because I, I think, I feel like I was born to inspire people. Like I really feel like now later in my life, all the things that I bumped, like POrogeria side life has been tough for me because I'm different. I'm just a different person. Some people are inspired by that. Some people see an opportunity by that. And that's just the way it's been. But I definitely feel like now, like once I got divorced, I got divorced four years ago and very, very, very hard for me to do. But I do feel like now I wouldn't be where I am right now. If I had not done that and let go of all of that. Cause that's what was standing in my way. I was trying to make other people happy and not even considering myself on a daily basis.

Shelly: 17:44

And what made you happy,?

Tiffany: 17:44

What made me happy?

Shelly: 17:47

You had to make yourself happy first.

Tiffany: 17:49

Yeah. And I didn't know what I was going to do. Like I called my brother and I said, Hey, I'm ready to go. And I was like, if you don't come now, just hurry up and come now before I changed my mind and he was like, well, I'll be there in 15 minutes!

Shelly: 18:05

Be out on the curb.

Tiffany: 18:07

I remember shortly after that, I was laying in bed at my parents and staring at the ceiling going, okay, now, what am I going to do? Like, I was a wife. I was a mom. I, uh, I've done. Okay. Done what I thought I was supposed to do. You know, I made a fan, blah, blah, blah. So now what am I gonna do? And just something went off in my head. And I said, I'm going to tell the world who I am. I'm going to tell the world who I am. I don't know how I'm going to do that, but I'm just going to do it. That's when I created Tenacious Tiffany.

Shelly: 18:40

Yeah. And that's what I wanted you on the show. And that's why I've been following you for so long, because I wanted this time on our show to give you a voice.

Tiffany: 18:49

Yeah.

Shelly: 18:49

To tell the world what Progeria was, because it is so important and there's millions of other disabilities, but this one is so amazingly unique. A nd, and I look at other Progeria patients and I think in some way, t hey're, they're beautiful. And they h ad t his certain beautiful,

Tiffany: 19:07

And they're all happy.

Shelly: 19:09

Yeah. They have this beautiful little aura about them.

Tiffany: 19:11

Do you notice that they're all happy? They're all smiling.

Shelly: 19:15

They're living their best for the time that they have on this planet.

Tiffany: 19:19

And they get that.

Shelly: 19:20

Yeah.

Tiffany: 19:20

That's, what's the difference? Like, so growing up, I didn't like, again, I didn't know that I had Progeria. I didn't know that i t had anything.

Shelly: 19:28

Right.

Tiffany: 19:28

I just thought it was different.

Shelly: 19:29

Right.

Tiffany: 19:30

I was just developing different. So I accepted that very early in life. And then when I found out that I actually had something that could, like, when I saw, when they told me I had Progeria, I said, just so what does that mean? They were like, we have no idea. They don't know for you. Like it could be like, we don't know. We have nothing to tell you. So that just even more so when I was in that transition period of my life, I was like, you know what? I really just, and I was scared. I was very scared to tell people that I had a disease because I said, well, that's going to open up a whole different can of worms for me when people actually knowing something is wrong, you know? Cause I get asked on a daily basis. You would not believe the kind of questions that I get asked. Right? So now I'm just like, Google it! You can Google it now. Youtube to explain it!. Now go figure it out, educate yourself.,,, Yeah. But I really want to, um, I really feel like now I, and not only just tell people about the disease, it's the disease that I have. It, it it's rapidly people under, uh, th they, they wonder why I'm just so on the go all the time. Go, go, go, go let Tiffany can't you just relax? No, I can't relax. I'm rapidly living my life. Okay. Because I don't know what's going to happen to me. And I don't know, one day I'm gonna wake up and go, Oh God I can't move. And I wish I would have done that when I could move. So I'm going to do, I'm going to do whatever I want. I'm going to do whatever I can. And I want people to understand that your life can be gone in a flash of an eye. Like it's still surreal that my brother is gone. Like, I don't believe that he's in the ground. That's not where he is. Right?

Shelly: 21:32

Right, right.

Tiffany: 21:33

So people don't get it. Don't appreciate it when it's gone. Get, appreciate it now.

Shelly: 21:39

Exactly. I think that is a perfect time to take a commercial break. We'll be back.

Ad: 21:43

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Shelly: 22:06

Welcome back listeners. And we are here with Tiffany Wedekind and she has Progeria, but we're going to shift the energy a little bit. And we're going to talk about your eclectic style and y our, y our amazing unicorn like energy. A nd, and I want you to tell us, u m, about your business and what you love most about the life that you have.

Tiffany: 22:29

Okay. Well, my business, my business is Wanderlust Studio and I created this studio out of, well. I needed a brick and mortar for my candles. I started a company called RecycledKarma years ago, um, making candles out of beer, wine and liquor bottles, recycling them. And I was able to build this shop. Um, but I wanted to include, I didn't want it to just be a candle shop. I wanted it to include all my artist, friends and everyone in the community. That was an artist. Uh, when I first moved in this building, this neighborhood is a little rundown. And I noticed there was a sign across the street that said, this corner started the art walk. And I was like, oh, there's no art down here. So I'm going to make it happen. And so I that's what I did. I have, um, a gallery showing every month we host a new artist in the community every month and have a show for them. And all the vendors in my shop are local, uh, local artists, local vendors, all sorts of stuff. I am honey. I have art. I have body products. I have my clothing that I do my little clothing line, but yeah, and we have yoga. I incorporated my love of yoga, um, and want to inspire people to take care of themselves, not just physically, but mentally art to me is an outlet. Um, it's very healthy. It gets your brain working. It very therapeutic. So I really wanted to incorporate art a nd holistic health. And that's what I did.

Shelly: 24:24

That's perfect. And it encompasses all of your life. So this makes you very happy and you're living, I think your best life, really?

Tiffany: 24:31

This is my best life. That's why so awesome about life, this life, we can have so many different lines, so many different lives. And that is really what I have held on to.

Shelly: 24:43

Yeah. So this is the life you've chose for yourself. And your life is amazing.

Tiffany: 24:48

I manifested this when I was 19, there is a shop down on campus. It was called Bizantiumsand there was King Avenue Coffee House attached to it. And they were going, you could walk in between the two. Okay. And I would go there all the time. I order my little coffee. Then I go and shop and get some beads because I used to make necklaces and all that. And I swear when I was at, I was like, I'm going to get my, I'm going to have my shop and I'm going to live up above it. And guess what?

Shelly: 25:18

Y ou do.

Tiffany: 25:18

I live upstairs.

Shelly: 25:20

Nice. Do you feel the love and the energy from your shop in your apartment? Does it come up through?

Tiffany: 25:29

Yeah. And you know what? People can feel it coming down because anyone that comes in here, they feel it. I get all the time that-this place just so cozy. I love the vibe. I love the atmosphere and it's, it's me. I mean, I have a business partner, but really I've put a lot of love into what I do. And I really just try to, I try to give everyone a big hug, right? Not just physically, but it, it really lights me up. When I see young artists come in here and they display their work and they get so excited that people buy it and that people are interested in it. And I'm like, you don't know what people are gonna like, right? There are so many kinds of, uh, mediums and textures and things that people do painting. Like when some people incorporate them in together. Um, I just really wanted to include all of my community because we have a lot of talented people in Columbus. And I just wanted them to have a place to come.

Shelly: 26:40

Are you doing anything special for the holidays this year? Wrapping up the year?

Tiffany: 26:45

Yes. Yeah.

Shelly: 26:46

For December. What's going on in December?

Tiffany: 26:48

Yeah, I have. I'm always, I always have things going on. We have, so this summer I actually created a market, a Saturday market. I had a lot of fun. And for the holiday, I've thought on Shop Small Saturday, which is this 27th of November instead of Black Friday, I hate Black Friday because I just think it's, you know, it's really ridiculous. So I was like, yo, what? We need to support local business. And so let's, let's do a market on Shop Small Saturday. So that's what I did. So next Saturday from noon to six and Marion Village, we will have our Shop Small Holiday Market. And I had a handful of vendors coming out and it's just a chance for people to come out and shop local.

Shelly: 27:38

What street is it on?

Tiffany: 27:41

It will be on South High Street is actually at Austin and Company. It's, uh, I, again, with my love of the community, I partnered with a lot of local surrounding businesses. So yeah, we're going to have that there and it's going to be fun and I'm looking forward to it.

Shelly: 28:01

Nice. You had a quote on one of your social media pages and I wanted to share it with our listeners because I loved it. So I'm going to steal it for the moment. So the quote is,"there are so many things that encourages one's existence. When you let go of everything that stands in your way of living and walk in alignment with your true purpose, you will become unstoppable," by Tiffany Wedekind. So I, yeah, and I want all of our listeners, cause we, we have so many listeners worldwide. And my purpose of this podcast, every, every time we have an episode is to create a family of every disability, mental or physical and, and show them that they're not alone. You know, I have people in Ethiopia, I have people in New Zealand. I have people, you know, in the tiniest of countries that I've never even heard of listen to this tiny little podcast of ours. And, you know, there might be somebody out there with Progeria that doesn't even know that they have Progeria, but something, something with today's episode may click with them and realize that they have a, some sort of little family worldwide and that this, this is how amazing their life can be if they choose to yeah. To have it this way, I want our listeners to find you and reach out and connect with you for all kinds of reasons. So can you tell us where Wanderlust Studios is and uh, what other kinds of social media you are on?

Tiffany: 29:28

Yes. Wanderlust Studio is in Marion Village, Ohio located at 1603 South Fourth Street. And the Instagram is@WanderluststudioCbus

Shelly: 29:40

So our time up for the day, but thank you so much. Absolutely. Being here today and educating us and entertaining us.

Tiffany: 29:48

I hope to be on again.

Shelly: 29:49

Absolutely. I think for now we need to do a unicorn Wednesday dance.(Dancing and singing)

Tiffany: 29:55

Oh, woot, woot! That's right.(laughter)

Shelly: 30:01

And with that, I will say thank you to Tiffany for being here today and thank you to our listeners worldwide for listening. Don't forget to hit that like and subscribe button. So you never miss an opportunity to listen to DisAbility Talks.

Music: 30:34

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Outro: 30:38

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