Tiffany Wedekind, owner of Wanderlust Studio and one of approximately 350 people in the world living with progeria, a rapid aging disease, at Hocking Hills. Credit: Courtesy of Tiffany Wedekind
Few adults get stopped on the street by strangers asking for their weight or where their mother is, but for 44-year-old Tiffany Wedekind, it happens almost daily.
The Columbus-based artist and business owner said she is one of about 350 people in the world who suffer from progeria — a rapid-aging disease — and is the oldest living person with the disease. Although Wedekind was aware of her differences from a young age, it wasn’t until her late 20s that she received her diagnosis, despite the typical lifespan of someone with progeria ranging from 7 to 13 years old.
“Typically, when you think of someone aging, they start having issues later on in life,” Wedekind said. “Those kinds of things happen almost immediately when kids are born with this disease.”
Although she is in good health, Wedekind said she still deals with ailments that affect her daily, such as struggling to chew food and not being able to walk barefoot.
“It’s little, simple things people don’t even bat an eye over,” Wedekind said. “I’m like, ‘I miss that.’ ”
In 2017, Wedekind decided to make her diagnosis publicly known by adding it to her Instagram profile. Almost immediately, she said news outlets began reaching out, eager to hear her story.
Following the death of her brother, who also suffered from progeria, Wedekind said she made the conscious decision to use her new platform to spread awareness and positivity.
“I really wanted to make something good out of it, because that sucked,” Wedekind said. “Life has been rough to me on so many levels because I am different, so if I put myself out there, I can show people, ‘Look, I can still live a happy life despite my circumstances.’ It’s all about perspective.”
Shelley Dawn Johnson, Wedekind’s friend and a local artist, said Wedekind is someone she admires, not just because of the platform she has built, but because of her spirit.
“It’s her attitude, it’s her energy, it’s her zest for life,” Johnson said. “It doesn’t make me elevate her on a pedestal because she’s had media attention. I have her on a pedestal because of the very sincere heart she has.”
Wedekind opened her shop, Wanderlust Studio, in 2019 to showcase local artists and sell products that will make others feel good, she said. According to the studio’s website, Wanderlust offers a variety of largely wellness-related goods and services in addition to art, such as skincare products, coffee and yoga sessions.
“I’ve always been an artist, and I’ve always been a creator,” Wedekind said. “I’m just doing it now on a more professional level.”
After opening her store, Wedekind said she had the privilege of connecting and bonding with other artists within the community. Chad Kessler, local artist and owner of 451 Spirits, said Wedekind’s passion for what she does and her personality are what make her stand out.
“When I first met her, I didn’t even know she had progeria,” Kessler said. “I could tell there was something going on, but I didn’t care because of her personality. [Progeria is] always the subject of the story, but she would still be the same person if that were not the case.”
For now, Wedekind said she will continue to share her story in an effort to make the world a better place.
“We only have one life,” Wedekind said. “I’m sharing my life with the world in hopes that it will inspire people to live more.”
