Coping with a Rapid-Aging Disease
On this podcast, Tiffany Wedekind discusses how she deals with progeria, a disease that ages her eight years for every 365 days that pass, through a combination of determination, humor, creativity—and resilience
[00:00:00] Stephen Calabria: From the Mount Sinai Health System in New York City. This is Road to Resilience, a podcast about facing adversity. I'm Stephen Calabria. Today on the show we have Tiffany Wedekind, an artist based in Columbus, Ohio. Tiffany suffers from progeria, a rare genetic rapid-aging disease that usually takes its sufferers when they're only children.
[00:00:25] At 45 years old, Tiffany is one of the oldest known progeria sufferers in the world, the other being her mother. We're pleased to have Tiffany on the show.
[00:00:35] Tiffany Wedekind, welcome to Road to Resilience.
[00:00:38] Tiffany Wedekind: Thank you for having me.
[00:00:40] Stephen Calabria: So we are here in your studio in downtown Columbus, Ohio.
[00:00:45] Tiffany Wedekind: Yes, Marion Village.
[00:00:47] Stephen Calabria: And we are surrounded by your art, by your clothes, by your...
[00:00:51] Tiffany Wedekind: Candles.
[00:00:52] Stephen Calabria: Candles. Candles. Now you have progeria. In a nutshell, what is progeria?
[00:00:59] Tiffany Wedekind: Progeria is a rapid-aging disease. And It causes a lot of complications with cardiovascular disease. Kids have strokes at a very early age. And a lot of other complications come along with it.
[00:01:18] Stephen Calabria: What is the average lifespan of folks with the disease? And when were you diagnosed?
[00:01:24] Tiffany Wedekind: The average lifespan is typically about 7 to 13 years of age. Kids are living a lot longer now because of treatments. I am forty-five. Oh, soon to be forty-six in September. Size wise, I am about four-foot-five inches tall, maybe shrinking by now, and I don't know, I think I weigh about 57 pounds at the moment. So I am very, very tiny. I wasn't diagnosed until I was thirty-one. So, when I was growing up, I did not develop like the typical patient with progeria.
[00:02:06] Stephen Calabria: I would say around puberty is when my features started to change a little. I was having some complications with my teeth. My brother Chad was actually having more complications than I was with his bones and his spine, you know, things like that. But later on in life, he started to have cardiovascular issues.
[00:02:30] At 30, he had his first open heart surgery and that sort of sparked more attention from the medical specialist. We were being seen by a genetic doctor early in life, but they didn't really dive in to figure out what it was that we had because it was so rare, first of all. And second of all, we weren't developing the same. So it threw them off.
[00:02:53] Tiffany Wedekind: So, as you transitioned from adolescence to adulthood, what were the warning signs for you, as far as your having progeria?
[00:03:06] Stephen Calabria: Well, I had a lot of issues with my teeth. Starting at around seven years of age, I started to get my teeth pulled. My baby teeth, because they wouldn't come out.
[00:03:18] But I was very active. I didn't have the kind of issues that my brother did. I started to lose my hair probably in my mid twenties. It started to thin out. I didn't have, like, a big, thick head of hair anyway, but for me, and for someone that had progeria, yes, I had a lot of hair. But, so my teeth and my hair, and then I discovered that I had aortic stenosis, around about the time that my brother passed away.
[00:03:47] So, that ha those have been, you know, and other than my feet, physical, features and things about me that are different. I'm in good health for the most part. Oh, and arthritis. I mean, I have all those things that a typical person that would be aging is getting.
[00:04:03] Tiffany Wedekind: You mentioned that you didn't have the typical features that a normal person with progeria has. What are those features?
[00:04:11] Well, growing up, a beaked nose, a pointy nose, bald. You know, they typically don't get hair. So, I was developing hair. I was, but my nose didn't start to change.
[00:04:56] Stephen Calabria: When you were given the diagnosis, how did you handle it?