00:00I almost lost my life and now I have bounced back.
00:04Tiffany, welcome back to Born Different.
00:07Could you just explain to people who might not be familiar with your story
00:10why you were born different before?
00:13I am four feet, four inches tall.
00:15I am 48 years old and I am currently the oldest known to be living
00:20with the rapid aging disease known as progeria.
00:24I was first diagnosed with progeria in my late 20s.
00:27It is very rare for any family to have somebody with progeria.
00:33I'm even more unique because I have three people in my family, including my mom.
00:38It is not known for many people with progeria to be able to have children
00:42because they don't live that long.
00:44Tiffany's case is really rare.
00:47So rare actually that we wound up asking Tiffany and family
00:51if we could write this up in a medical journal
00:53because this had never been described previously.
00:55So we're talking now down to one in 40 million, one in 50 million people.
01:01So incredibly rare.
01:03How does it feel to be turning 49 this year?
01:07Oh my gosh.
01:08It is...
01:10I laugh because I'm just like, is that even real?
01:14My spirit is still so young and it's not lost on me that
01:18no one with my condition has ever made it to that age.
01:23And I've outlived my mom, I've outlived my brother and a lot of other people.
01:27I am so thankful to be here.
01:29What a journey this has been.
01:31I mean, that is incredible.
01:33And I know you just mentioned then that it's been quite a tough year medically for you.
01:39Yeah.
01:39Are you happy to tell us about this?
01:42There was a good chunk of time where everything was good.
01:46Nothing was going on.
01:47I've been monitored by my cardiologist for a long period of time for my aortic stenosis,
01:54which is a very common thing with people with progeria.
02:00They need their aortic valve replaced because it gets so calcified because of the rapid aging disease.
02:07My aortic valve was narrowing.
02:09We needed to make a plan to get my aortic valve replaced.
02:14We had scheduled it for March.
02:16And then in January, I caught RSV, which is a respiratory virus.
02:23That caused my heart rate to jack up.
02:27That then snowballed into me having a heart attack, which was very, very scary,
02:34especially knowing that the history of my mom and my brother, that they had to have, you know, all this
02:40done.
02:40My mom had a heart attack, too.
02:42They came up with a plan to do the valve replacement because it had, like, pretty much shut at that
02:49point.
02:50I had that surgery a couple days after I had my heart attack.
02:54I have been through a lot of things in my life, traumatic, and I had never experienced something like that.
03:03During the surgery, there were complications, and that's what almost took me out.
03:08I almost lost my life.
03:10And now I have bounced back, and I am living my life to the absolute fullest and with the fullest
03:18tenacity.
03:19You are tenacious Tiffany, after all, so it makes sense.
03:22I am tenacious.
03:23Like, that just proved it.
03:24Would it be fair to say that the complications with your heart that you had earlier this year has made
03:31you want to seize life again?
03:33Oh, absolutely.
03:34It makes me want to seize life and experience any connection, opportunity, adventure, anything.
03:43I want to fall in love again.
03:45That's why I went on my little road trip, and I went to the ocean, and I went to the
03:49beach, and I was like, yeah, this feels good.
03:53Like, I'm ready to, like, just get out there and experience more life.
03:59I don't know how long I have, and nobody does, but a lot of people don't have that in their
04:08forefront.
04:08It's in my face every day.
04:10So, with progeria, you obviously lose your hair, don't you?
04:15I started losing my hair in my 20s.
04:21The hair loss is a result of my disease.
04:24What happens to you when most people, when they get older, they start to lose their hair.
04:29They start to lose their vision.
04:30They start to lose their teeth much later in life, but these things happen much earlier in life for kids
04:39that have it.
04:39And we spoke before about your new wig, which you have got on now.
04:46Yes.
04:47This is a homage to my mom because she was so proud of her Irish heritage.
04:51So, and I was a strawberry blonde when I was little.
04:54So, I was like, I'm going to go redhead.
04:57It looks beautiful.
04:59Really suits you.
05:01I love it.
05:02I feel more grounded.
05:03I'm myself with it or without it.
05:05Like, if I had to not wear it, I would still, my energy and who I am and my spirit
05:13would still be the same.
05:14What do you think having progeria has taught you about beauty standards?
05:21I have been able to adapt with the progression of my disease and the side effects that I experience, like
05:29losing my hair, losing my teeth.
05:32I've had all of my adult teeth pulled now except for five, which I am in the process of having
05:38them all removed.
05:40And it's due to my disease.
05:43The roots were resorbing, just pretty much disappearing.
05:46And then that's what causes my teeth to get infected.
05:48I would say that my confidence, thankfully, is very high.
05:53So, I am able to deal with having to keep up with beauty standards while dealing with the progression of
06:02my rapid aging disease, which is what everybody is terrified of, is aging.
06:09I am a walking billboard for somebody that's like, hey, man, I got to accept it.
06:17A lot of people can't accept the fact that they're getting older and they have to do all these things
06:22to make themselves feel better about themselves.
06:25I can't do those things.
06:27I will only go to a certain point for beauty standards.
06:32I have already shown the world with Born Different, me with no teeth.
06:37I've shown the world with me with no hair.
06:40Progeria is taking away those things that everybody is so desperately trying to hang on to.
06:47I'm not the only one, you know.
06:49I just choose to deal with it differently.
06:52What would you say to people who might be struggling with their confidence or feeling insecure about the way that
06:58they look?
06:59Our imperfections are what make us so perfect.
07:03And everybody ages differently.
07:06Some people age really slow.
07:07Some of us age faster.
07:11When people ask me what my life expectancy is, do you know what your life expectancy is?
07:17You don't.
07:18Nobody does.
07:19So take hold and really own who you are as a person.
07:24Stand in your authenticity.
07:26Like, you are on this planet to be you.
07:30We're all born different.
07:32But some of us are okay with that and embrace it and then share it with the world, which is
07:39what I'm doing.
07:39We're all born different.
07:45We're all born different.
07:45We're all born different.
07:46We're all born different.
07:48We're all born different.
07:49We're all born different.
07:50We're all born different.
07:51We're all born different.
07:51We're all born different.
07:51We're all born different.
07:51We're born different.
07:52We're born different.
07:52We're born different.
07:53We're born different.
07:55We're born different.
07:57You
