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I almost lost my life and now I have bounced back
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Tiffany, welcome back to Born Different. Could you just explain to people who might not be familiar with your story why you were born different before
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I am four feet, four inches tall. I am 48 years old and I am currently the oldest known to be living with the rapid aging disease known as progeria
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I was first diagnosed with progeria in my late 20s. It is very rare for any family to have somebody with progeria
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I'm even more unique because I have three people in my family, including my mom
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It is not known for many people with progeria to be able to have children because they don't live that long
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Tiffany's case is really rare. So rare, actually, that we wound up asking Tiffany and family if we could write this up in a medical journal
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Because this had never been described previously. So we're talking now down to one in 40 million, one in 50 million people
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So incredibly rare. How does it feel to be turning 49 this year
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Oh my gosh, it is. I laugh because I'm just like, is that even real
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My spirit is still so young and it's not lost on me that no one with my condition has ever made it to that age
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and I've outlived my mom, I've outlived my brother and a lot of other people
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I am so thankful to be here. What a journey this has been
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I mean, that is incredible. And I know you just mentioned then that it's been quite a tough year
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medically for you. Are you happy to tell us about this? There was a good chunk of time where everything was good, nothing was going on
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I been monitored by my cardiologist for a long period of time for my aortic stenosis which is a very common thing with people with progeria They need their aortic valve replaced because it gets so calcified because of the rapid aging disease
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My aortic valve was narrowing. We needed to make a plan to get my aortic valve replaced
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We had scheduled it for March. And then in January, I caught RSV, which is a respiratory virus
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that caused my heart rate to jack up that then snowballed into me having a heart attack
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which was very very scary especially knowing that the history of my mom and my brother
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that they had to have you know all this done my mom had a heart attack too they came up with the
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plan to do the valve replacement because it had like pretty much shut at that point i had that
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surgery a couple days after I had my heart attack. I have been through a lot of things in my life
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traumatic, and I had never experienced something like that. During the surgery
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there were complications, and that's what almost took me out. I almost lost my life
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and now I have bounced back, and I am living my life to the absolute fullest
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and with the fullest tenacity. You are tenacious Tiffany, after all. I am tenacious
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Like, that just proved it. Would it be fair to say that the complications with your heart
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that you had earlier this year has made you want to seize life again
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Oh, absolutely. It makes me want to seize life and experience any connection, opportunity, adventure, anything
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I want to fall in love again. That's why I went on my little road trip and I went to the ocean and I went to the beach
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And I was like, yeah, this feels good. I ready to just get out there and experience more life I don know how long I have and nobody does but a lot of people don have that in their forefront
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It's in my face every day. So with progeria, you obviously lose your hair, don't you
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I started losing my hair in my 20s. The hair loss is a result of my disease
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what happens to when most people when they get older they start to lose their hair they start to
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lose their vision they start to lose their teeth much later in life but these things happen much
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earlier in life for kids that have it and we spoke before about your new wig which you have got on
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now yes this is a homage to my mom because she was so proud of her Irish heritage so and I was a
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strawberry blonde when i was little so i was like i'm gonna go redhead it looks beautiful
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really suits you thank you i love it i feel more grounded i'm myself with it or without it like if
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i had to not wear it i would still my energy and who i am in my spirit would still be the same
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What do you think having progeria has taught you about beauty standards
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I have been able to adapt with the progression of my disease and the side effects that I experienced
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like losing my hair, losing my teeth. I've had all of my adult teeth pulled now except for five, which I am in the process of having them all removed
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And it's due to my disease. the roots were resorbing, just pretty much disappearing, and then that's what causes my teeth to get infected
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I would say that my confidence thankfully is very high so I am able to deal with having to keep up with beauty standards while dealing with the progression of my rapid aging disease which is what everybody is terrified of is aging
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I am a walking billboard for somebody that's like, hey man, I gotta accept it
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A lot of people can't accept the fact that they're getting older and they have to do all these things to make themselves feel better about themselves
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I can't do those things. I will only go to a certain point for beauty standards
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I have already shown the world with Born Different, me with no teeth
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I've shown the world with me with no hair. Progeria is taking away those things that everybody is so desperately trying to hang on to
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I'm not the only one, you know. I just choose to deal with it differently
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What would you say to people who might be struggling with their confidence or feeling insecure about the way that they look
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Our imperfections are what make us so perfect. And everybody ages differently
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Some people age really slow. Some of us age faster. When people ask me what my life expectancy is, do you know what your life expectancy is
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You don't. Nobody does. So take hold and really own who you are as a person
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Stand in your authenticity. Like you are on this planet to be you
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We're all born different, but some of us are okay with that and embrace it and then share
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it with the world, which is what I'm doing. Thank you
