Progeria (Hutchinson-Gilford syndrome) is a rare genetic disorder characterized by accelerated aging, typically diagnosed in early childhood with symptoms including cardiovascular disease, arthritis, hair loss, and dental issues; however, individuals with progeria can live fulfilling lives by managing their condition through self-care, community engagement, and maintaining a positive outlook, as demonstrated by Tiffany Wedekind who was diagnosed at age 31 and continues to run her own business while living with the condition.
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One Day In My Body - Tiffany Wedekind Is Living With Rapid-Aging Disease Progeria | TLCAdded:
Welcome to IH Hollywood TV. I am Noah Wilson and today's guest, she's best known on social media as Tenacious Tiffany. She's now starring in the new TLC series, One Day in My Body, which offers an unfiltered, deeply intimate look at people living with some of the world's rarest, most severe, and lifealtering medical conditions told entirely in their own voices. Please welcome Tiffany. What akin to IH Hollywood TV. Hey Tiffany.
>> Hi. Thank you for having me.
>> Yes. So Tiffany, uh let's go ahead and jump right into this. So you were diagnosed with progeria many years ago, uh but started noticing differences of your body's development at the age of 12. So for those that do not know, tell our viewers a bit more about this rare condition that you have.
So progeria also known as Hutcherson Guilford syndrome is a rapid aging disease and typically when someone is born with progeria you can tell within the first year or two of their life is when they typically get diagnosed.
And when you think about aging, like what happens to you when you're in your 80s, you know, 70s, 80s, that is happening at a much basically from the get-go. When kids are born with progeria, they start medical struggles very early, like things having to do with cardiovascular disease, um, arthritis.
Usually a lot of them are passing away from strokes or heart attacks before uh they even reach you know 15. So I didn't devel I didn't develop that way. My brother also had it and my mom also had it but my brother was he was 5 years older than me. So we were sort of like things were happening to him first and then things started to happen to me uh growing up like over time. So it was a gradual introduction to the disease itself because again usually you can tell within the first year or two that things are going to you know things are going wrong. So, I was developing at a much slower pace than what a typical person with progeria uh does. And I wasn't experiencing a lot of things, severe medical challenges until much later in life because I did get diagnosed much later in life.
>> 31 when I got diagnosed. So I had lived, you know, a whole lifetime in a disease that doesn't typically live that long and I didn't even know it.
>> So progeria comes with a lot of medical challenges >> and like loss of hair, issues with your teeth, especially um physicalities too where they're usually getting their u heart worked on at a very young age. and I didn't have any of that. Uh, so it affected me differently.
>> Aside filming this new CRA's with TLC, um, Tiffany, what does a normal day for you really consist of living with projgeria? Is every day always a challenge or, you know, are some days better than others?
>> Yeah, some days are better than others.
I mean, now that I'm getting older, you know, there's certain things like I get up a little slower, you know, like just like and especially, you know, recovering from what I just went through. I I typically just get up and I I just go.
>> Mhm.
>> Like I have my own business. I own a boutique art gallery that I sell my candles in. and I make candles and I just and I do my social media, you know, like I live my life. That's that's what I do. And I take the the good days and I run with it and the bad days I just try and push myself through. I give myself grace and I allow myself the time to rest or if I feel a little like I need to go lay down or maybe take it easy today because with me I don't know I don't know about everybody else in the world but when it comes to me my mind my body can't keep up with my mind because I am so busy and so focused on trying to grasp grasp anything that I can in a day that is a new experience or brings me joy or service I can do to other people, you know, like I'm all about community, too. So, and connection. So, I just I wake up, I check myself, I'm like, "Okay, things are working. We're good. Heart's good.
time to eat, you know, take my medicine, do whatever I got to do, and then there is no rhyme or reason with Tiffany. I am just like, >> you're this bright beaming of light, Tiffany.
>> I feel like life for me is the stage and it I can do anything I want with it.
We'll be sure to catch Tiffany's episode on One Day in My Body airing on TLC April 22nd at 900 PM Eastern Standard Time, Pacific Standard Time. And you can always now catch up on episodes and stream them the next day on HBO Max.
Thanks, Tiffany, for joining me and coming on the platform. Best of luck with you. We will continue to be following you on your journey with Progeria and keep on making us smile, my friend.
>> Thank you, Mom. Thank you, Tiffany.
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